It's not easy to talk about death. It can be depressing and scary, and often remains hidden in our culture. As a result, many people face their final moments alone in hospitals or nursing homes, hooked to clinical, life-prolonging technologies without loved ones or familiar surroundings to calm their fears and bring meaning to their end-of-life experience.
It wasn't always this way. In earlier times people died at home surrounded by family, friends and sometimes the entire village. Death was a central part of life, not something to avoid or frantically stave off.
Now the tide is turning again. In an effort to recreate these past experiences and integrate death into 21st century life, more dying individuals and their families are enlisting the help of "death doulas" to ease the transition. (Doula is an ancient Greek word for a woman helping another woman.) Like birth doulas who usher babies into the world, these end-of-life coaches — part of an exploding grassroots movement — usher the dying out.
"I think people are starting to come to the conclusion that we can die differently in this country," says Janie Rakow, president of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies end-of-life doulas. "We don't see death in our everyday lives anymore, and it has created real uncertainly and fear. The doulas bring so much education and comfort to the process."
Yearning for a better death
Rakow, who is an end-of-life doula herself, was facing burnout in her career as a financial planner and CPA in 2001 when she decided to quit and began volunteering at a hospice. Along the way, she heard about a new movement to offer enhanced non-medical support, deep listening and active guidance to people in the last days of their lives – a more intensive role than being a hospice volunteer. In 2010, she trained to become an end-of-life doula at Valley Hospice in Paramus, New Jersey. The program there was started by social worker Henry Fersko-Weiss who founded the first U.S. end-of-life doula program in 2003 at a hospice in New York City.
Far from being morbid, Rakow found that helping people plan a meaningful death and providing emotional comfort and support to them and their families during the dying process was unexpectedly beautiful and moving. "It just affected me so deeply," she says. "I saw how it changed people's lives and changed their deaths. It really transformed the ending for them and their families."
The idea of providing more than just pain management and physical care to the dying caught on, and in 2015, Rakow and Fersko-Weiss founded INELDA to begin training and certifying end-of-life doulas to work in hospices, hospitals and as private practitioners. Several other organizations have sprung up, as well, to offer doula training and certification programs. Like birth doulas, there's no national or international body that oversees certification for death doulas, so each program differs.
Janie Rakow, president of INELDA (seated on the floor, left), along with vice president Jeri Glatter (on the floor, right) and a class of newly trained end-of-life doulas. (Photo: INELDA)
Leaving a legacy
Doulas usually step in once a patient is put in hospice and nearing the end of their life. At INELDA, doulas are trained to start by helping patients sum up their lives. This involves asking lots of questions and getting to know the dying person on a deep level. "By understanding who they are we get to the meaning of their life," says Rakow. "And from there we can help them create what we call legacy projects."
These can include scrapbooks, videos or anything that honors patients and their achievements. Rakow recalls one woman who always cooked Sunday dinners for her two sons. As she was dying, she decided to write down all her recipes and compile them in a family heirloom book along with photos of their dinners together. Another dying woman's daughter collected stories about her from family members and friends and presented her with a book of memories at a celebration-of-life dinner. She died a month later at home, and her family put out the book after her funeral so guests could read it and share more stories.
Doulas also help patients plan what they want their final days to look like. They find out where patients want to die (for example, at home or in a specific room). They learn about their favorite places, such as a beach or mountain cottage, and create guided visualizations to help patients "visit" those spots when they're in pain or not feeling well. They document what music and movies or TV shows patients want playing in their room, books they want read to them, people they want around them, and anything else that will bring comfort, such as candles, aromatherapy or soothing rituals.
"This all gets included in a vigil plan," Rakow says. "It's an actual document so the family and other doulas who may be involved know what to do."
In addition, doulas help family members cope by explaining all aspects of the death process and are on hand before, during and in the weeks after the death to answer questions and offer grief support.
Each case is unique. "It's like birth," Rakow says. "Everyone comes in a little bit differently, and they go out a little bit differently."
Death done right
As death doula Alua Arthur explains in the video above, the job is not doom and gloom, but is life-affirming and invigorating work.
Because end-of-life doulas share such intimate moments with families, they often end up staying in touch. Rakow remained close to the family of the woman with the memory book. Four years later when the woman's husband was dying, he requested that Rakow return to help him and his children once again.
He chose to have his bed in the family room so he could be in the midst of household activity and visit with loved ones. He'd been active in a national wine club, and several members flew there to be with him. "There's a video of them standing around his bed, and he was actually toasting with them to his life and what he'd accomplished," says Rakow. "That was really beautiful. Our goal is to honor each person's life and help them and their family memorialize it."
Oddly, the process of planning for death can be inspiring, often helping family members and the doulas themselves work through their own fears about death and gain a new appreciation for life. "We tell our trainees they'll be more informed about how to live their lives once they understand how to die," says Rakow.