Who wants to listen to the angel of death?
WEEKI WACHEE, Fla. (AP) — The death doula drove down U.S. 19, past the hearing aid store, the funeral home and the Golden Corral with the senior discount.
She wore a black tourmaline necklace to ward off negativity, but still, she worried.
Perhaps God would ignore her prayers and the words would come out wrong. She second-guessed her long dress. She’d forgotten her watch and now maybe she’d talk too much.
Saundra Piercy swung into the parking lot of the upscale Residence at Timber Pines, where she hoped an audience awaited.
Upstairs, beneath the chandeliers of the Crystal Room, she fussed with her index cards, crammed with cursive. A trickle of attendees began to take their seats.
“Is it warm or just me?” she wondered aloud. “Am I having a flash?”
It was a hot June afternoon, many months into her quest to help people die a better death — exactly the way her beloved husband Bob didn’t, with a disinterested hospice nurse and all of those pain meds. She can’t remember their last conversation. She didn’t know she could curl up with his body in that narrow bed or wash him in lavender water for the last time.
Now a dozen people were arranged in front of her, wondering: what, exactly, is a death doula?
So Piercy, 77, passed out fliers printed with a grainy sunset — End of Life Advocate For a Meaningful, Dignified Passing for Loved One & — — pulled up a chair so her knees wouldn’t buckle and hoped that this time, someone would listen.
She had driven to a radio station in Brooksville to pitch her service on the air. Nobody called.
She talked to Ocala hospital patients, and eyes glazed over.
She got her phone number printed in the Citrus County Chronicle — nothing.
“Let’s face it,” Piercy lamented this winter on a call to yet another woman she hoped would take her seriously. “Nobody wants to hear this.”
Piercy can sense it, like people think they’re going to catch something from her.
She wants to tell people — prospective clients, yes, but anyone, really — that they don’t have to fear dying alone. Death doesn’t have to be an unspoken terror, nor an anesthetized exit stripped of all ceremony.
A doula, she desperately wants them to know, can help.
Piercy clutched a glass of cold water and looked out at the Hernando County Parkinson’s support group, where she was the day’s guest speaker. Most were older, like her. Some came with spouses; some had trembling hands.
She told them to think of her as a guide, even a midwife.
“I will be there for the dying person and the family to help them through all the turmoil,” she said.
Joyce Grout, 81, in a sunny yellow shirt, raised her hand.
How, she asked, is this different from hospice?
Piercy said she volunteers for hospice, and that hospice isn’t enough.
Death in America has gone from an intimate event at home to a transactional matter, Piercy lamented in her brusque Boston accent: “Send ’em to the hospital, call the funeral home, we’re all done.”
A doula steps in as a partner and advocate. She helps people talk through regrets, legacy and final wishes long before landing in the intensive-care unit. She aims to help a dying person and family make sense of the moment, ideally working with hospice or hospitals on the logistics, but free of their rigid regulations.
She has time and patience. She won’t let you fall through the cracks. She wants your last days to be dignified.
“We are trying to change the face of dying,” Piercy said.
In her grief after Bob’s death in 2016, Piercy discovered a book called Caring for the Dying, written by a social worker named Henry Fersko-Weiss.
In it, she found new purpose. So in early 2018, she flew to Atlanta to school herself in his program.
She was handed a thick, spiral-bound manual, where she underlined, on page 31, his story.
In 2003, Fersko-Weiss worked at a New York City hospice, where he saw too many people die alone, or overmedicated, far from home. Meanwhile, a friend worked as a doula, supporting parents as they brought babies into the world. Why was one a profound ritual of love, and the other a cold, medicated ordeal?
Fersko-Weiss retooled that doula model, aiming to hold dying people’s hands on the way out.
Five years ago, like-minded apprentices began seeking training through the International End of Life Doula Association. Now the organization holds trainings from Raleigh to Seattle, no prior experience necessary.
Nobody regulates doulas, but the group wants its emerging effort to be taken seriously. Two thousand people have been educated in the association’s standards, going on to seek private clients, or to ask obliging hospices and hospitals to work with dying patients.
In Atlanta, the group of hopeful death doulas practiced deep active listening together, asking, “Is that what I’m hearing?” The weekend days were long and intense as they role-played deathbed conversations. Piercy wrote notes in slanting longhand: Join them in their emotions. Maintain Sense of Boundaries!
She knew the model wasn’t based on rigorous science or formal studies, but instead on stories of fear and grief made easier to bear.
It would be humbling, she felt, to help a dying person braid together a life’s meaning. She starred prompts to spark memories, like, Tell me about some of the most important decisions you made?
Then there was the task of crafting a vigil, a plan for approaching death. The trainees looked at the wishes of a real patient named Arthur, who wanted a blue scarf over his lamp, shoes off, Van Morrison on. He wanted mango ice pops to soothe his dry mouth, his Yankees cap on his head and his parents’ ashes in his hands.
He wanted his bed wheeled outside so he could hear the birds.
Piercy starred every point.
Herself, she’d want Sinatra or classical music. She’d want lavender, candles and someone reading Jesus Calling to her, like she did every morning for Bob.
The doulas-in-training learned what to look for a month before death, like more naps and a tendency to turn visitors away. That’s the time to guide the family to tell stories and process the impending loss.
One or two weeks out, they learned, anticipate questions like, “Where am I?” Look for bruise-like blotches and blue fingernail beds. Listen for lungs rattling with buildup. Encourage the family to be there and to remember their loved one is not suffering.
She wrote: “There is a smell of death — little sweetness to it. Animals are very sensitive to it.”
There may come a day, they learned, that a dying person rallies.
Like when Bob ate ravenously from his Sweet Tomatoes tray three weeks before he died.
“Final gift from them,” Piercy wrote.
The men and women around the tables, now two dozen, sipped their styrofoam cups of coffee and brushed off pastry crumbs.
Piercy didn’t have time to tell them about the meandering years that had brought her here — the wild early days singing big band in Boston, holding down a day job in insurance, marrying the wrong men. Joining Al-Anon, making her own form of spirituality, meditating. Finding Bob.
He was the gentlest man she’d ever known, her jogging buddy and business partner. The one who accepted her fully.
She told the group he had just turned 71 when he was diagnosed with bone marrow cancer. Doctors said he had five more years of golf.
But that Thanksgiving, in 2015, Bob woke with an ankle swollen beyond recognition.
“He never walked again,” Piercy said.
After four months of chemotherapy, his doctor said, “There’s nothing else we can do.”
He came home on a Friday night.
They set up a bed in the living room, near his favorite recliner. But hospice was short-staffed that weekend.
“He’s thrashing, he’s sliding off the bottom of the bed,” Piercy recalled. “And I can’t lift him.”
When help finally came, Piercy remembers the doctor didn’t even look at Bob. Her saving grace was the New York nurse who finally snapped: “Are you shittin’ me?”
“If a doula had been part of this, there would have been an advocate,” she said. “The doula knows who to call, what to do.”
She checked her notes and apologized. There was so much she wanted to say.
She told them about one of the few times she’d been able to sneak her doula training into her regular volunteer work, while visiting with an elderly veteran. She’d been warned by Seniors Helping Seniors, she said, not to talk about heaven or angels because this man believed he was going to hell. He didn’t want to talk about his time at war, nor about how he lost his wife, his daughter and his dog in the span of three weeks.
Piercy said she looked him square in the eyes and told him to forgive himself. She said, “Have you ever considered this might be hell, right here, and that you’re going to see your wife and daughter again?”
She can’t say for sure what happened in that man’s mind, but she knows she felt something huge shift in the room.
He died just days later, she told them.
“Wow,” mouthed a man sitting beside his walker.
Piercy’s nerves still jangled, even as she knew that little would come of the day’s talk. The people before her weren’t residents; they probably weren’t promising clients. Her mind was already spinning ahead to her next calls.
Later that month, she’d land her first job through the doula grapevine, a woman in her 50s with only a few months to live. She’d listen to her heartaches and push her to get answers about her care from her hospice nurse.
Though the doula group suggests a rate of $30 or $40 an hour for services, Piercy would ask her new client for just $10, and only for as long as she could pay.
“I’m not in this to get rich,” Piercy told the Parkinson’s group as her hour wound down. She’d work for free, if it came to that. She just wanted them to listen.
Take care of business now, she said. Ask your loved ones how they want to die. Think about the difficult things; think about death.
The man with the walker touched his wife’s shoulder.
Information from: Tampa Bay Times (St. Petersburg, Fla.), http://www.tampabay.com.