The Death Doula

End-of-life practitioners are there to support and guide terminally ill people and their loved ones during a difficult time.
Photo by Emily J. Davis.

The trauma of her brother’s death in 2018 changed the life of Judy Iannaccone, who had just retired from a long career in public relations and communications. Her brother died in the hospice wing of a Florida hospital, barely three weeks after being diagnosed with cancer. Much of his dying process went unexplained to family members, including the common signs that indicate the end is near.

For Iannaccone, there were more questions than answers: “Are we doing the right thing? Is he getting what he needs?” The experience left her convinced that people need more emotional support as death approaches. It made her ponder her own purpose and led her to become a death doula. Through the nonprofit The HeartWay in Laguna Beach, Iannaccone now offers to others
what her family needed when her brother died.

Like birth doulas, their beginning-of-life counterparts, death doulas are there to support and guide the terminally ill and their loved ones during the dying process. Iannaccone describes what she does as “advocating for their needs, tending to their emotional and spiritual concerns, and providing compassionate guidance toward a comfortable and peaceful relationship with death.”

Not content to leave their final stage and its aftermath strictly in the hands of the healthcare and funeral industries, clients of end-of-life practitioners want to approach death without fear and anxiety—on their own terms to the extent that they can. They are, in a way, embracing what’s to come.

Iannaccone refers to herself as an end-of-life practitioner and views her role as that of a “companion” to terminally ill people and their families. Her services can include reading to them, preserving life stories and favorite memories, listening to music, guided imagery, aromatherapy, the gentle touch of Reiki to promote relaxation, and sound therapy using a chime or a singing bowl.

She might just sit and hold someone’s hand, offering soothing words. If they want to talk, she’s a good listener. “I meet them where they are. You can’t have an agenda,” she says. “It could be different today from the last time you saw them.”

A death doula differs from someone who provides hospice care, a palliative service of managing symptoms and pain for terminally ill people. Hospice care requires a physician’s referral. Medicare or private insurers can cover much of the cost. Most doulas don’t provide medical care, although they can take training and be approved for end-of-life medical aid. Their services are not paid for by insurers or the government.

Whereas hospice care is authorized for a set period and requires periodic reassessment, a death doula’s relationship with a person who is dying is more open-ended. It could span just a few hours before the last breath to days, weeks, months, and, in some cases, more than a year.

Photo of Lorraine Chavez and her mother, Joan Fields, being comforted by Judy Iannaccone. Photo by Emily J. Davis.

One of the people Iannaccone sees regularly is Joan Fields, the 96-year-old mother of Seal Beach resident Lorraine Chavez.

Chavez feels fortunate to have her mother residing in a small apartment attached to her house. A pair of caregivers rotate 24-hour care of Fields, who is bedridden, has chronic obstructive pulmonary disease, and is in the early stages of dementia.

Chavez brought her mother to stay with her about three years ago. Fields had been living independently in her own home in Encinitas until she fell and fractured her hip. Her health has since been in decline. Some days, she is communicative and aware of the present; other days, dementia puts her in a different time and place.

On Thursday afternoons, Iannaccone pays a weekly hourlong visit. Hospice workers come twice a week to assess Chavez’s mother and bring supplies, but, she says, they don’t stay long.

On a recent visit, Iannaccone begins as she always does by discussing Fields’ condition with Chavez, keen for any updates. They sit beside each other on the couch in Chavez’s living room before going up the stairs and across a walkway to where Fields lies in a hospital bed. She is situated near corner windows in the spacious main room of the apartment, the kitchen opening off to one side. It’s her permanent spot, a place where the sun streams in and Fields can see the sky.

Fields’ chief caregiver, Honey Dimafelix, turns off the TV on the wall across from Fields, whose head is propped up on a pillow and framed by her shoulder-length white-blond hair. The covers are pulled up to her chest. Dimafelix calls out to Fields, “Your friend is here. Your friend Judy is here.”

Iannaccone has a small cloth bag that holds a Bluetooth speaker, essential oils, a Tibetan singing bowl and striker, and books of poetry. She also carries a bamboo chime. Fields’ eyes locate Iannaccone. The older woman doesn’t speak, but smiles.

“You’re a sweetheart, you know that?” Iannaccone coos, leaning over Fields as the chime plays the sound of soft rainfall. “You like the chimes? Pretty, isn’t it?”

Then Fields, in a halting voice, tells her that she lives across the street. “Oh, from me?” Iannaccone replies. “That’s good. I’m glad.”

This is what Iannaccone means by “going with the flow” of wherever Fields is in her mind.

Iannaccone strokes Fields’ hair before getting out the singing bowl. She taps the side of it, but Fields doesn’t show much interest. Iannaccone reads a poem called “Halleluiah” from the book “Evidence” by Mary Oliver. She holds the paperback in one hand and Fields’ hand in the other. “She understands,” Dimafelix says. “She’s listening.”

At one point, Iannaccone remarks on how cold her own hand is compared to that of Fields. “You’re so warm. You’re a regular little furnace,” she teases. Fields laughs with her.

Iannaccone turns to another poem about faith and springtime. Fields begins talking about her house and her garden. “Roses,” she says. “I’ve been on a walk.” “Yes,” Iannaccone says, “I’ve been walking with you.”

Chavez’s dog, Lulu, a Maltese chihuahua, trots in and lies on the couch. Chavez is gone for a while but returns. A diffuser dispenses the scent of lavender. The chime sounds again.

“Isn’t that beautiful,” Chavez tells her mother. “I don’t know how it works,” Fields says. But she clearly enjoys it, given the smile on her face.

The atmosphere is calm, soothing. An hour of serenity.

Judy Iannaccone comforts Fields. Photo by Emily J. Davis.

Iannaccone has already discussed with Chavez the signs of when the final moment for Fields will draw near—changes in breathing, withdrawal, mottling of the feet, perhaps some agitation evidenced by pulling on her clothes or clenching her jaw. She has asked Chavez about such final-moment details as “Does she want Lulu on the bed with her?” “Who else does she want in the room?” “Candles?” “Aromatherapy?” It’s all planned out, as is a post-mortem vigil that Chavez says has been switched up a few times. Chavez takes comfort in all of this: “It brings a lot of knowledge to you.”

Iannaccone also can help fill out forms such as an advance directive or create a legacy project in anticipation of birthdays, college graduations, and weddings that someone won’t be around to celebrate. She might assist in collating family recipes, penning love letters, recording a video, or preparing an obituary.

An after-death plan might include family members washing the body, wrapping it in a shroud, and making a comforting space for visitors to come say a last goodbye—the way families once did in their parlors pre-20th century—before such rituals were ceded to the funeral industry. “So many things that were common became uncommon when death was put behind a closed door in our society,” Iannaccone says.

Instead of dying at home, as surveys indicate most people desire, the majority of Americans were dying in hospitals or in nursing homes until about 2017, when more people died at home than in any other single location, according to an analysis published in the New England Journal of Medicine. That’s around the same time that death doulas began to emerge in noticeable numbers.

Judy Iannaccone comforts Fields. Photo by Emily J. Davis.

Awareness of the services offered by death doulas grew during the chaos of COVID-19. The doulas initially adapted to restrictions by working with people via phone and virtual visits. Fueled by the pandemic, their numbers began a dramatic rise, including a more than sixfold increase—from 200 to more than 1,300—in the membership of the National End-of-Life Doula Alliance by 2022.

Iannaccone completed her first training with a different authoritative body, the International End of Life Doula Association, in October 2020. She had hoped to volunteer right away through hospice organizations, but that was not an option until coronavirus restrictions began to ease.

Iannaccone completed 600 hours of intense education as an end-of-life practitioner under the program offered by The HeartWay, the organization founded in 2015 by end-of-life educator Andrea Deerheart, who has worked in the field for 35 years. Lorraine Chavez met Deerheart through grief counseling after her husband died in March 2020.

The working philosophy greets visitors on the homepage, “Embracing Life Thru Honoring Death.” That’s a challenge in a culture in denial about wrinkles, let alone the act of dying.

Asks Deerheart, whose background includes a career in corporate marketing, “How do you face death living in a culture where one of its primary myths is anti-aging?”

She has served as a hospice social worker and holds a doctorate in mythology, with a focus on depth psychology (an outgrowth of Jungian theories on understanding the unconscious mind), comparative religions, death, and dying.

Over the past decade, Deerheart has facilitated an online discussion group that is part of the Death Cafe movement launched about a dozen years ago in London. The monthly 90-minute virtual gathering operates under the auspices of the Suzie Q Senior Center in Laguna Beach. The Death Cafe is not grief support or therapy. It’s a guided but relaxed discussion on issues surrounding life and death. The Suzie Q participants range in age from their 20s to 90s.

One of Deerheart’s goals is to desensitize the word “death.” Her belief is that human beings have a soul that continues on in some other realm when the body dies. “It is a death of this existence. Beyond this existence is an open field, depending on people’s beliefs and imaginations.”

According to Deerheart, there are some 20 descriptive terms in use for death doulas, including end-of-life doula, end-of-life practitioner, and death coach. “Doulas fill in a gap,” she says. “A big part of my job is to hold someone’s hand and let them know ‘You got this.’ It isn’t a trauma; it isn’t an emergency.”

Taking death in stride is a skill set that was lost when large numbers of people died en masse during the Civil War, ushering in the funeral industry, Deerheart says.

Doulas are bringing death back into the home. And if someone who is dying can’t be at home, they bring home to them—comforting blankets and pillows, familiar images, favorite stuffed animals, the music they enjoy. “I know they sound like small things, but they make such a huge difference,” Deerheart says.

The HeartWay training program is in its third year. It’s conducted mostly online and based on a nearly 1,000-page manual Deerheart developed.

Iannaccone is one of the doulas whom The HeartWay has certified, at a cost of $5,000 paid by the trainees. The one-year program includes clinical skills, historical perspective, the humanities, legal and ethical issues, and the physiology of dying.

The HeartWay’s death doula services are free to clients and their families, no matter someone’s financial circumstances, Deerheart says. “I do say if they have the means, and feel supported, to make a donation. Many donate; many can’t.”

The year her brother died, Iannaccone left a full-time position as director of public affairs and publications at Rancho Santiago Community College District. For now, she considers her role as an end-of-life practitioner an avocation rather than a profession.

She has also been a hospice volunteer, providing companion care, memory support, and other assistance to patients. This work with the dying feeds her soul.

“They inspire me, whoever they are, whatever stage they are in, and whatever situation,” she says. “I learn so much from them, and I learn so much about what it is to be dying.”