It wasn’t until Angela Bell turned 88 that she started using a cane. An energetic and active member of her Santa Barbara senior living community, the only true sign of Bell’s age is her shoulder length white hair. Her blue eyes shine, her laugh is effervescent. But she noticed recently that her body had begun to slow down — most markedly, her balance was off.
Though Bell had taken the aging process in her stride, she found a cane hard to reckon with—particularly when using public transportation. She decided, however, rather than lament this emblem of old age, she would befriend it. “I named it ‘My Lover’, Bell said. “Anyone that comes to drive me somewhere reminds me to take ‘My Lover' along!”
Bell’s cane isn’t the only aspect of aging she has befriended. Death itself has become a comfortable companion. “I’m approaching end of life,” said Bell, who will celebrate her 89th birthday in January. “I decided I wanted my death to be how I wanted it to be." To tackle the often convoluted and confusing death and funeral industry, she enlisted a “knowledgeable, trusted” friend, Arlene Stepputat -- a death doula. “I called Arlene and said, ‘I need to find out about cremation.’”
Angela Bell and Arlene Stepputat
The concept of a doula, as a trained non-medical companion during childbirth has gained considerable traction in recent years. Celebrities and wellness gurus praise their personal “birth doulas” on Instagram and in interviews. Megan Markle was reported to have worked with one in preparation for the birth of her son, Archie.
Birth doulas help expectant mothers prepare emotionally, spiritually and logistically for birth. Similarly, death doulas have developed and applied the same logic to end of life care. “A doula comes in for the planning stages when someone is looking at their death,” said Stepputat, who is also a hospice chaplain, minister and certified advanced care planning facilitator. “Maybe someone had a health scare or just want to start exploring. You don’t have to be sick to start planning.”
Stepputat has presented workshops and keynotes at national palliative care conferences. She also co-leads a group of volunteers who serve as death doulas in and around Santa Barbara. “Arlene is extremely knowledgeable,” Bell said. “She is very knowledgable when i have some something I’m not clear about.”
Stepputat is part of a growing community of death doulas. Like birth doulas, death doulas have existed in various forms for centuries, but the practice is undergoing a renaissance. Death doulas work with clients who are near death or who want to prepare for it (even if death might not be imminent). They provide spiritual, emotional and logistical support, assisting with wills, funerals and memorial planning. Death doulas aim to bring humanity to end of life, as well as a dose of joy.
Working with Stepputat helped Bell realize that she wanted to be cremated. A big piece of a doula’s job centers on coordinating end of life logistics. Stepputat “made appointments for different places in Santa Barbara that offered cremation,” Bell said. “We went out and decided to visit these three places.” And much to Bell’s surprise, “we had so much fun, I mean it was such a fun thing.”
Bell and Stepputat found themselves laughing at the macabre humor prevalent in several of the mortuaries. “One place we went to just had a storefront that said, “cremation services,” said Bell. “And then there was a sign on the door that said ‘welcome’ that struck my sense of humor. Are you sure you want to put a sign on your door that says ‘welcome,’ when all you do is cremation? You might be deterring visitors,” she added, laughing.
Bell ended up picking McDermott-Crockett Mortuary. "The funeral director, Jenny Parkes, told me that once a year they had a memorial service for the homeless,” Bell said. “They did it for people who died on the street. They had a full catered lunch and service, just like a family would have. I thought that was so heartfelt and thoughtful.” Bell’s contract with McDermott-Crockett is set to go now. “If something happens to me,” she said, “everything is in place.”
Bell is in good health. She isn’t dealing with a terminal illness or expecting to die in the (relatively) near future, “I’m not on any medication,” she said. “I have no serious health issues except, I am a little out of balance physically. But I am not out of balance mentally and I am very aware.”
Since collaborating with Stepputat, Bell’s outlook on death has become both practical and positive. “Working with Arlene has given me a security and the awareness to deal with the end of life process in the way that I deal with paying my bills. It’s a very practical yet spiritual and loving approach.”
The Planning Process
There is no regulatory framework outlining a professional standard for death doulas. However, several organizations offer certifications. Francesca Arnoldy is program director for the End-of-Life Doula Training Program at the University of Vermont, which began in 2017. “The interest and level of demand for this is astounding,” Arnoldy said.
“We feature doctors, nurses and social workers, so we hear from many voices,” she added. “It’s crucial for death doulas to understand the field of end of life, well before they step into it.”
Death doula training programs, of which there are now several, provide participants with detailed information about how to navigate the labyrinthian funeral industry.
According to Parting.com, a funeral home comparison site, the average traditional American funeral costs $7,000 to $10,000.
Theater on the Threshold
Each Sunday, Trisha Jauchler trades her death doula hat for a directorial one. She has brought people of all ages together to rehearse and put on a play. It’s not a Greek tragedy or a Shakespearean romp.
Instead, it is a frank, funny and heartfelt story about a family faced with an impossible decision; whether or not to let go of their daughter, who has been in a coma for many years. Jauchler hopes this play, ‘Time to Go’ by C. E. McClelland, will help audiences understand the importance of writing advanced directives.
Maintaining a practical and methodical outlook on life and death is all well and good, but the process of dying involves and requires intense paperwork.
Alua Arthur, a death doula and the founder of Going With Grace said much can go wrong when people don’t prepare for their death. “Things go awry when there is no discussion of death, or a resistance to it up until the time that it is imminent,” she said. “For example, people often say, ‘we don’t know what happened, she fell asleep It’s like, oooph, no, she probably will never wake up again -- that’s a bad situation and there is so much that can be done earlier.”
A major part of a death doula’s practice involved streamlining the logistical side of death, so that when the end is near, clients and their family can focus on caring for their loved one, rather than panicking about finances, wills and property dispersion.
Often the writing up of wills and advanced directives will be delegated to lawyers, but death doulas bring a unique perspective. They encourage their clients to think carefully and creatively about what they want their funerals, memorials or end of life ceremonies to look like. Then, when the time comes, they make the vision come to life.
“Maybe there is a person who has always loved Christmas and their end of life is happening in June,” Arnoldy said. “Maybe what they want at the time of death is their room to be decked out in Christmas decorations.” “It’s really unique what helps people feel safe, comfortable, at peace and honored.”
Planning her own end of life service has become increasingly important to Bell. “It’s empirical evidence that I am going to die,” she said. “I don’t want to leave this planet without people knowing what I want [for my memorial]. especially my family,” who live on the East Coast.
Her memorial service is “going to look like a celebration,” said Bell, who has her guest list and music picked out already. “I told Arlene I want a tape to be played at my memorial service.” A friend who passed away, had recorded a song he wrote for Bell years ago onto a cassette tape. “But I don’t have a cassette player anymore, so Arlene said, ‘I can transfer that onto a CD and then we can play it,’” Bell said. She is handling that for me. She has my back.”
Stepputat has helped Bell exercise dominion over her own death. “Working with Arlene, I started to do an obituary,” Bell said. “I have it mostly written, it’s what I want it to say, not what someone else is going to say about me”. Another one of Bell’s wishes? To die at home -- she’s already set the scene. “I would love to die, reclined, doing my morning meditation.”
Death Doula's History
Like Bell, most people would prefer to die at home. Before the turn of the 20th century, the American family and the family home played a major role in death. In the 1900s, death and the dying process moved away from homes and into hospitals. A recent study found about 60 percent of Americans die in hospitals, despite 80 percent saying they would like to die at home. Death doulas are trying to change that statistic.
Modern medicine and the funeral industry rose up together in the wake of the Civil War. More and more people (soldiers first, then the rest of the population) began to go to hospitals when they were wounded or ill. If they died in hospital, their bodies would be sent to a funeral home or morgue for embalming. The home was removed from the process of death and dying.
Hospices were developed in the 1960s. They began as spaces where people who could no longer benefit from in-patient hospital care had their emotional, spiritual and medical needs met. However, by the early 21st century, some began to criticize hospice.
Henry Fersko-Weiss, founder of the International End of Life Doula Association or INELDA, said recently at the Global Wellness Summit that hospices “have seen their scope narrowed to physical comfort and crisis management.” Fersko-Weiss said the scene of death needs to encompass more than just comfort and management. In 2006 he told the New York Times, "what happens to the soul is partly determined by how it leaves this life." The scene of death, he said, “is a sacred space," and the doula's job is to protect it.”
Maintaining a “sacred space” around death is an old concept. The practices of today’s death doulas echo those of 19th century American death workers. “Watchers [as they were known at the time] would be responsible for keeping vigil as a person was passing away,” said Dr. Karol Weaver, professor of medical history at Susquehanna University.
“After the person passed, they sat with the dead,” Weaver said. This was in service to a “good death” an idea based on the 1415 text, “Tractatus Artis Bene Moriendi” or, “The Art of Dying Well” that was widely circulated at the time. Having a ‘good death’ didn’t mean death wasn’t painful or sad, “but it was good in that you felt the life you had led was compensation, like an eternal reward,” Weaver said.
Doulas tend to see death less as a singular moment and more as a process. In 2018, Kate Lipkis, a birth doula, lost a friend, Ruth, to cervical cancer. Lipkis was training to become a death doula with Olivia Bareham, founder of Sacred Crossings. When her friend was dying, Lipkis (with the permission of her friend’s family) asked Bareham to come to Ruth’s bedside. “When Ruth died, Olivia said, just keep on talking with her, she is still here, she loves that you are loving her up, she loves hearing you, ”Lipkis said. “She [Bareham] really recognizes the part that soul plays.”
All doulas see death from their own perspectives; Arthur sees it as, “a process of the body. Some bodily transformation, beyond that I don’t know.”
From Bareham's perspective, death is unclear. “I think it happens differently for everyone,” she said. “Some have a profound moment of the last breath, for others it takes time. The moment of death is nebulous.” For Stepputat, death is, "the last great mystical journey. Each one of us has to explore and find out what it is for ourselves.”
As for Bell, she’s just excited. “I think dying is a freedom, I think it would be wonderful to have consciousness without the gravity of the body or the weight of the body,” she said. “I really don’t have a fear of death at all.”
The last wishes
Olivia Bareham performs end-of-life rituals with clients. All photos courtesy of sacred crossings
