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Doulas for the Dying

By Ann Neumann 

Helping handsSusie Cushner studied to be a death doula three years ago, after a series of personal tragedies precipitated a move across the country. The training started her on a path of self discovery she desperately needed, she told me last week in a cafe in Brooklyn, New York. A photographer by training, she recently founded the Palliative Care Education Initiative to raise awareness of palliative services, a medical specialty that grew out of hospice more than a decade ago and aims to treat suffering patients who may not yet qualify for hospice.

Although the term “doula” has been around for centuries, and is most often applied to those who aid women in childbirth, a new interest in death and dying—in response to the institutionalization of the dying process and a growing population of elders—has resulted in death doula training programs sprouting up across the country, including at universities like Baylor in Texas. I first encountered death doulas while doing research for my book, The Good Death: An Exploration of Dying in America, and was struck by how the programs evolved, alongside the hospice movement and the proliferation of palliative care. As a hospice volunteer, it seemed to me that those who wanted to assist the dying already had a path forward—hospice; and that instead of improving the quality of care that hospice programs provide (which is covered by Medicare), they chose to create a new area of end-of-life care.

The concept of death doula training came out of a 1998 conference in New York and was taken up by The Jewish Board of Family and Children’s Services, in conjunction with New York University Medical Center’s Department of Social Work. They used private funds to create the Doula to Accompany and Comfort Program. Today, because the programs are unaccredited by state or federal agencies, there’s no way to know how many practicing doulas there are. But the programs abound, most often led by charismatic trainers who come out of nursing, social work, or belief systems like Buddhism. “How do you credential heart?” Deanna Cochran, whose training program is called Accompanying the Dying, asks on her website.

Henry Fersko-Weiss, who founded The Open Center in New York, also claims to have founded the first US training program. Other prominent trainers in the field, who are often treated like gurus by their students, include Frank Ostraseski, founder of the Metta Institute, who requires enrollees to come with, “a commitment to engage in mindfulness practices and other contemplative practices during the program.”

The Good Death“It’s very competitive,” Cushner told me last week, referring to the trainers who claim authentic or best practices. Although many doulas are volunteers—some charge for “extended services” such as assistance with living wills and advance directives—doula training is a rising business. Ostraseski, Cochran, and others charge from hundreds to thousands of dollars for training. To “explore your ideas to serve others during this most sacred and vulnerable time,” Cochran charges $650 for 1.5 hours and $2,500 for two-day sessions. Ostraseski’s Metta Institute, which targets medical professionals, charges $1050 for a five-day session, plus additional fees for room and board.

American religion is most overt around the death bed; the language of these trainers, whether directed to patients or trainees, is rife with spirituality and the assertion that spending time with the dying will not only aid their “transition,” but also the trainer’s wholeness and quality of life. Ostraseski, who is the founding director of the Zen Hospice Project in San Francisco, offers programs “emphasizing the relevance that the lessons learned near death have for living a more loving and compassionate life.”

Henry Fersko-Weiss, who founded the International End of Life Doula Association, based in New Jersey, writes at their website, “One of the worst effects of not speaking openly about death is the loss of sacredness in how we approach this momentous event. Instead, dying feels profane and empty.” INELDA charged $600 per person for a twenty-two-hour training in “beautiful, warm Pompano Beach, Florida!” last month.

In an audio clip on her site, Cochran declares that the essence of the doula experience is creating a sacred space, “in quiet, in reverence, in love, and in spiritual and emotional support.” Her objective is to help future doulas create a dying ritual they can then share with their patients. “You’re creating your heart-centered practice,” she comfortingly says in a soft voice. The creation of a service field of death doulas, then, is driven by trainees’ search for “mindfulness” and meaning (and presumably, trainers’ financial stability) as much as it is by service to the dying.

And it’s this aspect of the doula movement that is disconcerting. By promising to reveal the true meaning of life—once the animating promise of legacy religious denominations—doula trainers charge their adherents for access to magical, terminal patients who will save them from their mundane lives and give their existence meaning. In Secularism in Antebellum America, John Lardas Modern writes that “marks of spirituality—the ethic of authenticity as well as the search for unity and wholeness—are not simply phenomena within religion but discursive effects of secularism (bound up, for example, with ideologies of the market, the triumph of the therapeutic, sentimental individualism, and the progressive telos that accompanies each).”

When looked at from this angle, the popularity and proliferation of death doula training is characterized by the most criticized aspects of today’s self-help, therapeutic culture: it provides those searching for meaning in life to buy experiences (or products) that promise to provide it. This analysis of the movement doesn’t detract from the care and comfort that death doula’s provide their patients; undoubtedly both doulas and patients benefit from kind attention. Also, the doula movement addresses a gross oversight in the current medical care delivery system which fails to meet the needs of ill patients who do not yet qualify for hospice or get the companionship and attention they need from their doctors or family members.

Yet, doula training and service does ameliorate calls for improvement of existing care systems by providing an answer to those who need more during their end weeks and months: hire a doula. Why be compelled to advocate for an egalitarian solution to our health care crisis when you can participate in a “free-market” solution—that makes you feel good? For those without the resources to engage a doula, there remains no alternative but getting by alone.

Susie Cushner abandoned her plans to be a death doula in order to create greater awareness for palliative care needs across the country. And she’s found a way to, as doula trainers say, “ascribe meaning to death” for herself, by joining the Spiritual Care Team for the Palliative Care Unit at Mt Sinai Hospital. Until the country faces the shortfalls in our hospice and long term care systems, those elders who don’t have access to doulas will not receive the care they deserve.


About the Author 

Ann NeumannAnn Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. She is the author of The Good Death: An Exploration of Dying in America. Follow her on Twitter at @otherspoon and visit her website.