Death Doulas: Helping the Terminally Ill Pass Peacefully

Death Doula Linda Barnard in Aliso Viejo, California, on Dec. 16, 2020. John Fredricks/The Epoch Times

Suzanne O’Brien remembers attending a birthday celebration, years ago, and sharing her work with a fellow partygoer.

“The next thing you knew, the entire party was crammed in the kitchen, hanging onto every word I was saying,” O’Brien told The Epoch Times.

O’Brien is a death doula; a nonmedical professional that cares for terminally ill patients. Emotional counseling, patient and family comfort, and memorial service planning play an intricate part in the balance of an end-of-life doula’s services. Also called death midwives, death doulas have experienced a recent increase in clientele since the onslaught of COVID-19, O'Brien said.

“Everyone is now aware that death can happen at any time and that it is a guaranteed part of our life’s journey.” O’Brien said. Not all the people that death doulas help are terminally ill; some are simply looking to prepare for death.

Books line the shelves in the home office of end-of-life doula Linda Barnard in Aliso Viejo, Calif., on Dec. 16, 2020. John Fredricks/The Epoch Times

The term doula originates from ancient Greece, and was used to describe a woman who serves. It’s today more commonly used to describe a person trained to provide comfort and support to women during labor and childbirth.

The prominence of death doulas increased at the turn of the century, and is now also associated with those trained to assist and provide support to patients as they near death. Though death doulas never have a set time frame with patients, there is a median window of 16 days until passing, with most patients being elderly.

A Call to Help

After experiencing the loss of a dear friend and several family members, Linda Barnard began her death doula journey in October. A resident of Aliso Viejo in Orange County, California, she founded Heading Home OC after noticing a need for helpers that specialized in these services. Her background as a registered nurse certified in hospice and palliative care has outfitted her to be the caregiver her clients need during their final life stage.

“The privilege of being invited into a most difficult time for families—it is a sacred time that will forever be in their memory,” Barnard told The Epoch Times. “The work is challenging but incredibly rewarding when you are able to provide comfort, assurance, guidance, and care.

“End-of-life doulas care for many types of families and situations,” she said. “Doulas may help people who are interested in planning their end-of-life experience. Some people may already be in hospice, but there are people who engage with doulas who do not have a terminal disease. People may have had an experience that prompts them to get their affairs in order, or have specific wishes for the end of life.”

As the topic of death is never an easy conversation to have or prepare for, Barnard recommends people plan ahead for future medical treatment preferences, consider their preferred place to pass, and determine who they would like to assist them through the process. They should also consider how they would like to be remembered, she said.

An Avoided Topic

A recent MorseLife Hospice and Palliative Care study found that 60 percent of respondents hadn’t discussed their end-of-life care preferences with anyone. About 45 percent of those people were aged 65 or older. Many of the study participants said they weren’t prepared to discuss their death, or believed they were too young to think about it.

But O’Brien, a registered nurse based in New York, said people should prepare and empower themselves through the process.

“Let death once again be in the natural fold of life,” she said.

End-of-life doula Linda Barnard works in her home office in Aliso Viejo, Calif., on Dec. 16, 2020. John Fredricks/The Epoch Times

O’Brien said the pandemic has changed the way death doulas interact with patients; many interactions must now be conducted through over-the-phone counseling sessions due to barriers providing on-site physical care and in-person caregiving education.

Easing the Transition

Although doulas are more often associated with new life, birth doula Katy Barnes said she could also understand how the profession could help those whose lives are ending.

“I think a death doula can be a great thing because, like a birth doula, they are there in one of the most vulnerable and intimate parts of someone’s life,” Barnes, who lives in Los Angeles, told The Epoch Times. “Doulas usually know the systems they are working in, so they will be able to help you navigate them.

“When you are losing someone, you are vulnerable, scared, exhausted, overwhelmed,” she said. “A death doula would be able to help the family navigate all the logistics you never knew came with the death of someone, especially if they are an experienced one.”

O’Brien founded a website that provides in-depth death doula training. It says the top concern people have when facing death is the desire not to burden loved ones. Death doulas aim to vanquish this belief by being the bridge between hospice workers and medical staff members, providing the organization and comfort patients and family members need in life’s final moments.

“One of the most powerful things is how many people talk about loved ones who have died already being there with them,” O’Brien said. “This is really powerful, and I have been told this by so many of my patients. It is said that our deceased loved ones come to help us cross over.

“The other is how many people wait for someone to leave the room for them to take their last breath. People in sleeping comas know the five minutes that you leave the room. It makes you think how much more is going on in this beautiful experience.”