Courtesy of The New York Times.com | By Alina Tugend | Photo By Joshua Bright | Originally Published 01.24.2015 | Posted 04.21.2018
MARY HILBURN spent the last three years watching her partner of 17 years, Jo Allison Bennett, die of brain cancer. Their families weren’t supportive, and many of their friends found the experience too emotionally wrenching to become very involved.
So in the last few months of Ms. Bennett’s life, Ms. Hilburn turned for help to Deanna Cochran, a death doula.
The word doula, Greek for “woman who serves,” is usually associated with those who assist in childbirth. But increasingly, doulas are helping people with leaving the world as well.
“She was a wonderful gift,” said Ms. Hilburn, 58, who lives just outside Austin.
Ms. Cochran, a former hospice nurse, helped Ms. Hilburn with practical arrangements, like choosing and organizing caregivers, but more important, she was there “during that in-between time, after hospice had gone, when you want to say, ‘Can you come and just hold my hand or sit with me?’ ” Ms. Hilburn said. “That’s where the doula fits in.”
The concept is not completely new; hospices have long had “vigil volunteers” who sit by the bedsides of the dying, but it has now expanded far beyond that. Since there are no federal or state accrediting agencies for death doulas — also called end-of-life doulas, death midwives or simply companions — there are no statistics on how many exist.
And just as there isn’t one name for such a job, there isn’t one description. Some volunteer to visit a dying patient weekly. Others charge to do things like organizing paperwork, living with a patient or assisting with funeral arrangements.
But everyone involved in the field agrees that interest both in hiring and training to be such a doula is growing as an aging population grapples with how to gain some control over this most uncontrollable stage of life.
The problem, they say, is that people don’t know how to prepare for it, face it — in ourselves or our loved ones — or cope with it after it happens.
“We see lots of deaths on TV, in video games, but we’re detached,” said Laura Saba, founder of Momdoulary, which trains and certifies birth and death doulas. “A doula is more comfortable with death. We can provide the framework to address it. We can help make space for a conversation.”
Ms. Cochran, for example, helps people get together their papers, like wills and advance directives. She visits hospices, private homes and nursing homes and arranges family meetings and postdeath needs.
For her services, Ms. Cochran charges $450 for a consultation and $900 and up for private hospice care services, depending on what is needed.
But she emphasizes that she often works free of charge, as she did for Ms. Hilburn, if she can afford to do so.
She also runs a death doula training program at AccompanyingtheDying.com with costs from $59 a month for independent study to a $4,000 six-month program. In addition, she offers private and group classes.
Ms. Saba, of Staten Island, works as a birth doula, but she said time spent in hospitals helped her see “the need for someone to provide support to a family who had a member pass.”
About two years ago, Ms. Saba began offering training to death doulas through her website mourningdoula.com. Her classes cost $1,400 for 20 weeks, and cover topics like aiding people in exploring end-of-life options and helping families choose caskets.
The program also includes information about health issues like safely handling foods.
Ms. Saba said for her services as a death doula, she charges nothing for consultations and $100 to $200 for meetings about end-of-life documents. A package that includes three meetings and staying with a patient in the final hours runs from $800 to $1,200.
While the practicalities of death are important, the fact is, “most of us don’t even know how to go into a room where someone is dying in a way that is helpful,” said Frank Ostaseski, founder and director of the Metta Institute, which offers an End-of-Life Practitioner Program, a five-day residential program for $1,000.
“We walk right in and start blabbing away with our nervousness,” Mr. Ostaseski added. Instead, he said, pause at the threshold before walking in. Talk less. Listen More. “It’s not your opportunity to have some deep psychological experience. Maybe all they want is someone to do their laundry,” he said. “It’s their dying, not yours.”
Those who run the training programs say they have enrolled chaplains, funeral directors, social workers, nurses and doctors who want to serve their constituencies more “mindfully and with compassion,” Mr. Ostaseski said, whose institute has a program solely for those professionals.
Since death doulas are unregulated, it’s important to ask questions before hiring someone. Ms. Saba offers suggested interview questions on her website, which include asking prospective doulas how they were trained; whether they have any political or spiritual aim; how well informed they are about end-of-life documents; and any limits placed on support in terms of time, activities and tasks.
Not all who are interested in becoming an end-of-life doula want to make it a career. Mara Altman, a writer, signed up as a volunteer with the nonprofit Doula Program to Accompany and Comfort in Manhattan. Volunteers in the program visit the same person weekly for an hour until the person dies.
“I had always been freaked out about death and thought if I got to know it, I might not feel that way,” Ms. Altman said. “I wanted to help someone, but I also wanted to come to terms with the whole death thing.”
So after she did the eight-week training course — two to three hours weekly — required by the program, she met several possibilities at a nursing home.
“I had the best connection with Jethro,” she said, a man in his mid-50s who had AIDS, diabetes and other ailments.
His background was different from hers. He was a sanitation worker from the Bronx; he had no friends or family around.
“It wasn’t about helping him come to terms with death, which I thought it would be,” she said of their time together. “IIt was focused on doing whatever he wanted.” That meant playing blackjack or watching soap operas.
He was failing but hung on, and when he died last year, Ms. Altman had spent almost four years visiting him. “It was a wonderful relationship,” she said.
Amy Levine, a social worker who runs the program Ms. Altman volunteered for, said she received about 100 applications and accepted up to 15 people for training annually, because not everyone is looking to volunteer for the right reasons.
People who had a recent loss, for example, are probably not the best fit, she said. And someone expecting profound philosophical insights by visiting with the dying — a sort of “Tuesdays with Morrie” situation — will probably be disappointed, she said, referring to a best-selling memoir and television movie about the death of a 78-year-old man.
Bill Keating, a retired corporate lawyer, has volunteered with Ms. Levine’s program for about 15 years and is currently visiting a man in his 70s who has had a series of strokes.
“He is a rabid Republican and I’m a Democrat, and we’ll have these silly conversations,” Mr. Keating said. “He just wants to sit and chat. Nothing more than that.”
And Ms. Altman, who took a break after Jethro died, plans to serve as a doula again.
Did connecting to Jethro help ease her great fear of death?
“It didn’t relieve anything,” she said. “But it was so worthwhile.”