SAFE PASSAGE

“Death doulas” are helping Americans savor the last days of their lives

The first moments of life can be filled with heightened emotions, confusing paperwork, and plentiful bodily fluids. Life’s final moments are often similar. And just as the past few decades have seen a growing number of doulas (the term is Greek for “woman who serves”) providing emotional and practical support for women during childbirth, the past few years have seen a growing number of individuals offering similar services at death. Birth doulas guide you into life; death doulas guide you out.

Like birth doulas, death doulas don’t play a medical role. They work in concert with doctors, nurses, and other healthcare professionals, but don’t replace them. The terms can vary, as do the roles—alongside “death doulas” there are death midwives, death coaches, end of life guides, thanadoulas, and soul midwives, among others. And while some step in earlier or later in the death and mourning process, all aim to provide practical and emotional support at the end of life.

In a world where doctors and nurses tend to be pressed for time, family and friends are often anxious and upset during death, and not everyone is part of a supportive religious community, death doulas willingly walk into a void that would otherwise see many facing life’s inevitable end without enough help.

Since there’s no all-encompassing professional organization or government agency tracking death doulas, it can be hard to gauge the industry’s growth. But those who work in the field say they’ve seen a surge in interest in the past two to five years. As a January article from the New York Times notes, an increasing number of death doula training programs are being offered, and there’s also a growing number of professional organizations (more on that below).

The role itself isn’t always well-defined. Death doulas can work in a healthcare setting or in the home, and may be contacted by medical professionals, by the family, or by the client themselves. An “end-of-life doula” may be more likely to step in early in the process, helping both the healthy and the terminal ill make sure their medical care, legal paperwork, and other details are managed in the way they would most prefer.

A “death doula” might become engaged closer to the act of dying itself, helping those at the end spent their final moments as they chose—perhaps in a “life review” that helps them make sense of their own story or in a ritual of their own creation. “Mourning doulas” are more likely to support families after a loved one has died.

A “death midwife” or a “home funeral guide” is more likely to assist the dying and families in planning a meaningful funeral, which, in a related trend, could take place in the home—a reemergence of an American way of death that was traditional before the Civil War.

By some accounts, the first organized doula service has its roots in New York City in the late 1990s, with a woman named Phyllis Farley. “It was an idea I had from working with women in labor,” she says in a YouTube video. “It occurred to me that you need the same qualities at the end of life, helping people, as you do at the beginning.”

In 1998, Farley was chairwoman of the board at the Maternity Center Association in New York City when she attended an end-of-life conference. As a proponent of natural childbirth, she believed in the importance of supporting women through the entire birth process. During the conference, she was struck by a similar message offered about life’s final moments. A talk by Sherwin Nuland, a professor of surgery at Yale University School of Medicine and the author of How We Die: Reflections on Life’s Final Chapter, encouraged the idea that people need companionship to accept death. But as someone who worked in a big city hospital, Farley knew that a disturbing number of people die alone.

In response, Farley formulated the idea of a volunteer network of individuals to “accompany the dying.” Today, the non-profit organization she helped found, Doula Program to Accompany and Comfort, includes  Many doulas says their greatest offering is sometimes simply being a companionable presence. about 50 volunteers who visit people with terminal illnesses either in healthcare facilities or homes around New York.

Last year, the writer Mara Altman wrote about her experiences in the program, which entailed visiting a 50-year-old former sanitation worker named Jethro, who was dying of AIDS and diabetes on the Lower Side without family or friends. He hadn’t had a personal visitor in more than a year. Altman’s big discovery? Instead of meaning-of-life, Tuesdays With Morrie-style revelations, Jethro mostly just wanted to hang out and play blackjack. In fact, many doulas says their greatest offering is sometimes simply being a companionable presence.

“People call it holding space,” Betsy Trapasso, an end-of-life guide and advocate in Los Angeles and a former hospice social worker, told Quartz. “Being there and letting people talk, letting them express. Because a lot of times, people don’t let you talk about [death].”

However, Trapasso notes that death doulas also frequently take a more hands-on role. “Some will do an advance directive—what do you want in the hospital, do you want to be resuscitated, etc. Some will do a life review—what’s important to you, what have you done? Making the person feel like if there’s anything that needs to be said or done [it gets done].”

Death doulas can also help create the right atmosphere during a death, Trapasso said. “A big thing with death doulas and midwives is ritual. Is there music you want played, is there food, clothing or anything that’s meaningful to the family? That’s really important.”

Not all doulas are volunteers: for some, it’s an emerging profession. Fees for services vary widely, from consultations that may cost several hundred dollars to packages of several meetings and a final visit with the dying, with an overall price tag around $1,000. There are also a rising number of schools offering programs for doula training.

Former hospice nurse and active end of life doula Deanna Cochran runs a training program called AccompanyingTheDying.com, which includes private and group classes as well as a six-month training program. Laura Saba, who works as both a birth doula and a death doula, offers 20-week classes that cost $1,400 through her website mourningdoula.com. The Buddhist-oriented Metta Institute offers five-day  An increasing number of hospitals offer end-of-life doula programs. training modules as part of an “End-of-Life Practitioner Program,” although the programs are currently being revamped.

Social worker Henry Fersko-Weiss, whose work at a large hospice in New York City led him to develop a doula program there, has developed a training program that allows one to become a certified vigil doula (working with those who are actively dying), a certified lead doula (serving patients and families for a longer period before and after death), a master doula (who can help hospices or other institutions set up doula programs) or a certified trainer of other doulas. In 2003, Fersko-Weiss also cofounded the International End of Life Doula Association. It’s one of the professional organizations that have popped up over the last few years, which also include Cochrane’s End-of-life Practitioners Collective.

While doulas have generally worked outside of official health care channels, that’s starting to change. An increasing number of hospitals offer end-of-life doula programs for patients nearing death. For instance, Baylor University Medical Center in Dallas, Texas, runs a doula program with seven trained volunteers, and 25 throughout the Baylor system. The volunteers are trained to provide comfort, support and companionship.

Some doulas, like Cochrane, are in the unique position of hoping that their services will one day be obsolescent. According to the End-of-life Practitioners Collective’s website, Cochrane believes “that there will come a time when doulas and midwives and guides and other end of life practitioners will not be needed for the most part because this knowledge will be within each family again.”

In fact, before the Civil War, most people in the United States took care of their dead at home, sitting with the dying at their bedside, washing the corpse themselves, and holding funerals in their parlors (before the room was rebranded “living room” to erase its association with death). The rise of embalming in the 19th century helped create a professional funeral director role, but many families—and the dying—still feel a gap in support.

For many doulas, the work is far from depressing. Instead, it’s deeply rewarding. “It’s the greatest present you can give anybody—to help them not be afraid to die,” Trapasso said.

Follow Bess on Twitter at @besslovejoy. We welcome your comments at ideas@qz.com.

home our picks popular latest obsessions search