Bringing Peace and Comfort to the Dying
Although Marne Lucas isn’t religious in the traditional sense, she’s come to understand the importance of faith and spirituality in death.
In her four years as an end-of-life doula — a non-medical professional offering holistic support for people nearing death — Lucas has learned that spirituality can provide a sense of calm and clarity in the final moments of life.
At 51, the Portland, Oreg.-based Lucas shows almost no signs of aging, except for the faintest wrinkles around the corners of her green eyes. She’s tall and lean with a smattering of freckles over her nose. But now that she’s the same age as her dad was when he died, she’s been reflecting on her own passing.
“My personal sense of spirituality shifts the longer I work with death and dying,” said Lucas. “Spirituality helps you realize you can’t control anything, which allows people to give into feeling like they are part of something bigger.”
As many have been forced to reckon with death during the COVID-19 pandemic, Lucas thinks there will be a greater move toward faith. “The thing we can do right now is commune around spirituality,” she said.
While many more people are now confronting death for the first time, Lucas has been facing it for years. Lucas was 28 when her dad died of pancreatitis and she was too-soon thrust into the position of end-of-life caregiver.
“The ICU was ill-prepared to explain to us what was happening,” she recalled. “It was a very negative experience, and the wheels just came off the bus.”
It was this experience — what she calls a “bad death” — that inspired her to become an end-of-life doula. She wanted to help others avoid bad deaths, typified by needless suffering, few choices, and prolonged medical care.
"Unlike hospice care, where workers often don’t have the resources to spend extended periods of time with patients, end-of-life doulas sit vigil with their clients and family throughout the dying process."
Lucas, who is also a multi-disciplinary artist, started her end-of-life career in 2014 with the “Bardo Project,” collaborating with terminally-ill artists to help them complete their legacy projects. Lucas began her formal end-of-life doula training two years later, after hearing the term for the first time at a TED Talk.
Lucas’s family and partner are supportive of her work. It’s helpful that her partner is an ICU nurse practitioner who has his own familiarity with death, she said. And although his experience is less personal than Lucas’s, they still share a similar landscape.
Unlike hospice care, where workers often don’t have the resources to spend extended periods of time with patients, end-of-life doulas sit vigil with their clients and family throughout the dying process.
According to Janie Rakow, President of the International End of Life Doula Association (INELDA) — a New Jersey-based program, and the organization from which Lucas received her training — end-of-life doula-training attendance has more than doubled in the last year.
INELDA has trained close to 3,000 end-of-life doulas since 2015. While in-person training has been halted during the pandemic, the organization has shifted to virtual programming.
The significant rise in popularity of end-of-life doulas is part of a larger “positive death” trend. Positive death advocates want to change the conversation around death, from something taboo to something that’s simply a fact of life.
Advocating for Patients
While quarantined in Portland, Lucas has been working virtually. She can no longer physically sit with patients, which is a big part of her work, but she’s doing what she can, given the circumstances.
She’s currently working with an 85-year-old cancer patient via phone. Although they banter back and forth most days, Lucas is beginning to have deeper conversations with her about reaching the end of life.
“An end-of-life doula is a spiritual-support role,” said Lucas. “We are there to advocate for patients and to support them and whatever spiritual needs they have.”
Lucas says she often sees clients who aren’t particularly religious begin to think about faith as they approach death. She usually asks her clients to talk about what they think will happen when they die, which she says, gives them peace of mind. “We try to help alleviate psychological pain, so they can let go and leave their bodies,” Lucas said.
Denise Milazzo, an end-of-life doula and registered hospice nurse in Lake Oswego, Oregon, has also come to recognize the importance of faith in death — especially during this pandemic.
Like Lucas, Milazzo, 68, has seen that clients often cling to faith at the end of their lives in an attempt to find some level of peace before they leave the world.
“People are looking for affirmation in the afterlife,” said Milazzo. “A lot of people, regardless of faith, want to make sure they are blessed, and that it’s okay to go on to that next life.”
As the eldest of five siblings, Milazzo has always been a caretaker. She worked as a hospice nurse for 30 years before training as an end-of-life doula (also through INELDA) last February.
Even though she's only been officially trained for several months, Milazzo’s been doing the work of an end-of-life doula for years. After seeing how uncomfortable her family members were around death, she learned how to help her loved ones respect the space of a dying person and be fully present. “I started having people look at loved ones as they look at themselves,” said Milazzo.
Milazzo, like Lucas, believes that the intersection of death and spiritually has become more pronounced during the pandemic. Her hope is that, in light of COVID-19, people might be more willing to embrace end-of-life doula care and the notion that the experience of death doesn’t have to be a bad one.
“People are more interested in talking about death since the pandemic,” said Milazzo. “They are focused on the negative aspect of death — but there is so much more to it.”