Doulas, known for helping people go through childbirth, are now helping at the end of life as well.
Some hospices have seen an opportunity to work with doulas, while others say that their tried-and-true volunteer programs are already providing similar services.
Hiring a birth doula—also known as a birth companion or birth coach—has grown increasingly common over the past few years, so much so, in fact, that the state of New York is reportedly moving toward the use of doulas to reduce childbirth deaths. But “death doulas” are rapidly catching attention across the globe, too, especially after a recent wave of international news coverage.
The roles that death doulas play vary. In some cases, they enforce a dying person’s plan for how and where he or she wants to die when nobody else is around. In other cases, doulas help individuals craft scrapbooks or compile recipes for loved ones. Sometimes, their role might just be holding a dying patient’s hand at a bedside.
“I think people have come to realize that we’re not doing death well, especially in this country,” Janie Rakow, president of the International End of Life Doula Association (INELDA), told Home Health Care News. “Death used to be all around us and part of our community, but now it’s more of a medical event, and I think we’ve become so far removed from understanding it that people are becoming anxious and fearful.”
INELDA is a New Jersey-based nonprofit dedicated to fostering the use of “death doulas” in hospices, hospitals and individuals’ homes. Since launching in 2015, INELDA has trained “thousands” of hospice nurses, home care clinicians, chaplains and other interested “lay people” in its three-pronged approach to end-of-life comfort, Rakow said. As part of its focus, the approach reinforces active-listening skills and shows prospective doulas how they can help create a lasting legacy for near-death individuals.
Last year alone, the nonprofit put about 700 trainees through its three-day course, Rakow said. The course costs $750.
“I think we are going to see the demand for end-of-life doulas in all areas, wherever people are dying—whether it’s within a hospital, hospice, care facility or private care,” she said.
Several hospices from across the country have also taken advantage of INELDA’s training, according to Rakow, including Hudson Valley Hospice in New York, Our Hospice of South Central Indiana and Hospice of San Luis Obispo County in California, which, in turn, has implemented its own formal doula program.
“It was a way of stepping up the services we offered to individuals who were dying,” Kris Kington-Barker, executive director of the California hospice, told HHCN. “We previously had a ‘Vigil Volunteer’ program, which was a much more passive program and tended to center around us becoming involved with the dying person only at the time they were actively dying.”
The hospice currently has about 20 volunteer doulas, Kington-Barker said, noting that it plans to add additional doulas in the near future.
INELDA also offers a special certification and business class for those interested in becoming a “professional” doula. So far, INELDA has certified slightly more than a dozen people, Rakow said. One of them, Nancy Compton, has opened a business called 11th Hour Care and is contracting with hospices in Idaho.
There are no state or federal regulations in place for practicing as an end-of-life doula, whose services can be offered free of charge or for profit. When doulas do ask for compensation, services are paid for out of pocket.
Existing programs mimic doula care
Despite newfound hype, hospice, home health and palliative care companies like Nashville-based Compassus say they have no intentions of turning to specially trained professional doulas in the near future—and that they’ve been taking similar approaches for decades.
Compassus is one of the nation’s largest hospice providers, operating in more than 30 states and across more than 150 different locations.
“We do not bring in death doulas from the outside,” Synthia Cathcart, Compassus’ vice president of clinical development and education, told HHCN. “We’ve never had to consider it.”
Instead, the industry has traditionally relied on volunteers to help guide patients and their families through the final days and hours of life. At Compassus, those volunteers are known as its “Angel Watch” team, though they’re sometimes referred to as “11th Hour” or “Vigil Volunteers” elsewhere.
Similar to INELDA trainees, Compassus’ Angel Watch volunteers undergo dedicated training that addresses the many psychological and social issues that become common leading up to death. Additionally, during training, volunteers learn about the different cultural, religious and spiritual considerations they have to keep in mind.
Routine training is required for all of Compassus’ volunteers, Cathcart said. The extra training for Angel Watch volunteers takes roughly one full day. After training, Compassus’ Angel Watch volunteers are typically sent to work with patients who have no family members or support system present while they’re actively dying, she said.
All hospices are required to have volunteers as part of Medicare’s conditions of participation. At least 5% of staff hours must be performed by volunteers.
Angel Watch volunteers, or other people who provide services similar to a doula, are not specifically required by Medicare, however.
“Our volunteers, because of their passion and the way they believe so strongly in what they do, we find that sometimes they are the best bedside ambassadors for not only hospice care, but also the dependents,” Cathcart said. “I don’t want to say ‘never,’ but I don’t foresee a need [for professional doulas] for quite a while.”
INELDA has not noticed a trend in hospice and palliative care companies bringing doulas in-house, Rakow said.
Boomers change the conversation
Compassus and the programs it has acquired over the years have, in some form, offered end-of-life comfort care similar to doulas since at least the late 1980s, Cathcart said.
But the level of attention given to those kinds of services has gone up as the baby-boomer generation ages, she said.
“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Cathcart said. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”
Even though Compassus and other larger hospices aren’t presently taking widespread advantage of certified death doulas, Rakow said they could eventually help provide value to the baby boomer generation and boost business moving forward, as boomers may be more likely to choose a hospice with an expertly trained doula on staff.
“[Volunteers] can’t spend hours with one family, whether it’s doing legacy work or a vigil plan,” she said. “They can do pieces, but the doulas are the ones that have the ability to be involved for those long stretches of time.”
Besides INELDA, other organizations that claim to have end-of-life doula programs include Quality of Life Care, Doulagivers, the Lifespan Doula Association, and The Doula Program to Accompany and Comfort.
Written by Robert Holly