The tender work of a death doula
Illustrations: Colleen MacIsaac.
With gentle guidance, the journey through life’s final stage can be peaceful and comforting
Nights inside the Colchester East Hants hospital’s palliative care unit are long, dark, and quiet. There are no beeping machines or doctors rushing to save lives, and if there’s an ambulance, its sirens are never louder than a person’s last breath.
Cindie Smith knows, because that’s what she’s listening to tonight. That, and the count in her head.
Exhale … one, two, three …
A nurse tells Cindie that her friend’s changing breath is “just a part of this process.” She hasn’t been active for a day and a half now, and there’s a growing pause between her exhales and inhales. Her eyes are closed, and her face is a fading map of wrinkles. Smith holds her hand and waits.
Four, five, six, seven …
Newborns take 30 to 60 breaths per-minute, lowering down to about 12 to 20 breaths per-minute for the average adult. It dwindles like energy does: slowly and hardly noticeable. The body’s breath becomes its natural clockwork.
It’s no wonder breathing is loudest in the room of a dying person.
Eight, nine, 10, 11, 12, 13 …
A breeze makes its way through the open window. It’s late, and the trees outside are lost in the night’s darkness.
Cindie’s eyes begin to close, and she stops her count. Gently squeezing her friend’s hand, Cindie takes a final moment of stillness before her voice brings life to the room. “Now you have the answer to every question,” she says to her.
Her friend’s life has dwindled down to that last exhale — the one before Cindie started to count. It was when she’d experienced life’s one promise: death.
Cindie takes a moment before leaving to notify a nurse.
Before the technological advancements of the 20th century — when many hospitals were built and the future of medicine looked hopeful — women stood at the forefront of health care.
It was a woman’s responsibility to tend to the sick, pregnant, and dying, using skills that had been passed down by the generations of women before them. In ancient Greece, they called these women “doulas,” which translates to “a woman servant or helper.”
Sometime in the last hundred years, the meaning changed. Now it refers to the trained non-medical professionals that support their clients before, during, and after childbirth. And a new movement is redefining the term once again, to include more than one kind of traditional doula. End-of-life doulas (otherwise known as death doulas or death midwives) are rising with the newfound death wellness movement.
It started in 2003 with Henry Fersko-Weiss in New York City. Fersko-Weiss was the manager of Continuum Hospice’s social workers when he identified a gap between medicine and hospice care: neither catered to end-of-life patients’ personal, spiritual, or emotional needs.
He went on to create the first death doula program based on the approaches of modern birth doulas. Like birth doulas, death doulas create a plan with their clients that outlines their wants and needs while the client can give informed consent. They are active listeners that help dying clients to find peace at the end of their lives.
Death doulas also do legacy work with a client, discuss meaning, and explore what’s important to the client before and after death.
In 2015, Fersko-Weiss, along with Meredith Lawida and Janie Rakow, founded the International End of Life Doula Association, or INELDA, as a nonprofit corporation. In the following three years, the organization trained over 2,000 people (including hospital workers).
Death doulas are gaining global recognition.
In 2017, the University of Vermont’s medical college became the first school to offer a professional doula certification program.
The next year, end-of-life doulas joined the National Hospice and Palliative Care Organization in Washington, D.C. to create a council. According to the Dying Well 2019 Global Wellness Trend report, these doulas are working throughout the U.S., U.K., Canada, Australia, Brazil, and Mexico.
Death doulas remind us of the value of compassion and ask: how do you want to die?
In surveys, most people say they want to die at home, surrounded by their loved ones. But only 15 per cent do.
Instead, most reach their lives’ most natural conclusion in a hospital, hospice, or a long-term care facility. Doulas work to help meet end-of-life wants and needs. The spark behind the modern movement is simple: a good death is essential to a good life.
In the final days, wants matter — and sometimes what’s wanted can’t be found inside even the calmest of hospital units.
Cindie drives in silence.
It’s 6:50 p.m. when she pulls into her client Bonnie’s driveway. Not long ago, Bonnie pulled into that same driveway, parked her car, and went inside. She opened her door to her husband laying dead on the kitchen floor. As a middle-aged man, his heart attack came as a surprise.
That’s why Bonnie’s meeting with Cindie tonight: they’re going over the final draft of her end-of-life personal directive. Bonnie knows that death is just as unexpected as life.
“It’s really important that I hear rain in my end of life,” Bonnie says. She’s sitting with Cindie at her kitchen table, sipping an orange pekoe tea. The radio plays softly in the other room. “If it’s not raining, an online audio recording would be fine. It just brings me peace,” she says.
An end-of-life personal directive is a legal document. It outlines a person’s medical and personal wants and needs. Without having the document written and witnessed, it’s nothing more than a person’s wishes. It’s important, but Cindie believes that the conversation that comes from writing the document is even more important.
Western society rarely talks about dying. Grief is seen as a burden and death has become a medical failure. Instead of talking about it, death lingers in our subconscious minds.
Sheldon Solomon, professor of psychology at Skidmore College in Saratoga Springs, U.S.A., has developed the Terror Management Theory. His belief is that death anxiety is the driving force behind our everyday actions.
We eat foods we don’t enjoy, we go to the gym, and work a job with a salary large enough to support our habits to delay death. Naturally, it’s death that we fear.
Except our fear only manifests the things that kill us, like anxiety, denial, and anger. After spending years studying the effects of death awareness on our mental and behavioural wellness, Solomon argues that death awareness makes us better people. The sooner we acknowledge our own mortality, he believes, the more grateful we become for our own experiences.
Cindie jots down a few notes, lifts her head and takes her glasses off. “You’re a curious woman, Bonnie,” she says. “Have you ever thought about continuing to learn about the world in your final days?”
Bonnie cuts her off, “Oh yes! I wrote that down as the next point,” she says with a laugh. The youthfulness of Bonnie’s voice speaks to her character. Bonnie’s honest. She cares about the people around her. That’s another reason why she’s meeting with Cindie tonight: when she dies, she wants to make it easy for her daughters. She doesn’t want to leave them guessing about her wants.
“I’d love to have my children read to me when I approach my end-of-life,” she says. Bonnie explains that she read to her mother when she was in a brief coma years ago. When her mother regained consciousness, she said she remembered Bonnie reading to her.
Cindie turns the conversation back to Bonnie’s personal directive and asks about life support. In the first draft of the document, Bonnie wrote that she’d like to be taken off of life support if she wouldn’t survive without it.
“So, you understand that in a situation where life support is your only way of continuing life, being taken off of it might result in death?” Cindie asks. A somber tone takes over the room.
“Yeah, so …” Bonnie trails off, sighs. “Yeah,” she says.
After years of denying death in Western society, it’s hard to comprehend death as a reality.
Since the birth of modern medicine, we’ve begun to plead with death, to try and reach a negotiation with fate. Even medical experts overestimate survival rates. A study found that in 1999, 63 per cent of patients in Chicago hospice care programs were given unrealistic prognoses dates by physicians. It’s no wonder that loved ones shut down and turn away when facing death. There are words for life’s beginnings — like childbirth or the start of a new relationship — but there’s nothing but a growing silence towards the end.
It was 1989, the same year that the Skydome opened in Toronto and the Berlin Wall fell in Germany.
It was a world of hope worth believing in because it was the dawning of a new era, full of possibility. And in the midst of it all, Cindie Smith gave birth to her second daughter, Maggie.
At the time, her first born, Emily, was eight years old. Their old navy blue house was brimming with the energy of Emily and her closest friends — Bart, Kelly, Sara, and Amy. It was the designated hangout spot.
Most Fridays, the group plowed through the front door in a wave of chatter after school, stopping long enough to greet Maggie with a kiss on the cheek. Emily’s friends became like family, a bond that’s grown stronger with time. Or perhaps the bond grew from circumstance. Bart, Kelly, Sara, and Amy were there, sharing the Smith family’s grief.
Approaching her sixth birthday, Maggie’s body was no bigger than a baby’s. She was eight pounds and practically floated in her crib. Her brain grew with the speed of her body, a result of her disorder. Maggie was born with cerebro-oculo-facio-skeletal syndrome, a rare genetic disorder causing pre- and postnatal delays in growth. At the time, she was one of five others in the world to be diagnosed.
When doctors gave Maggie a life expectancy of five years, her mother, Cindie, began to grieve.
“Grief is grief,” she says. “It happens to us all and often. Sometimes grief comes from the loss of a pregnancy, or perhaps a job, maybe it’s from longing for grandparents that passed away. “It’s grief, it’s a loss.”
On a Saturday morning in 1994, Maggie began to quickly approach her death. Her breath became laboured and she was in pain. It was the death that Cindie spent the last five years grieving. She wasn’t sure what to expect. Grappling with it all, Cindie turned to a nurse for direction and asked about the nurse’s experience.
“In many cases when a child is experiencing similar symptoms, when they’re struggling to breathe periodically, you’ll find that the child may almost slip into a coma where the breathing becomes very gentle,” she says. “It’s almost rhythmic. Then, they very gently and quietly die and their breathing stops.”
“I can do that,” Cindie says. The small bit of knowledge was the courage she needed to find strength and give Maggie a good death. “We’re going to go home.”
With the tiniest of masks and an oxygen tank, the Smiths went home. It happened the next day, just as the nurse predicted. Maggie was calm, gentle, and surrounded by love when she took a final sigh.
It’s 10 p.m. in Truro.
Cindie hugs a milky cup of tea between her hands, as she’s ready to discuss Paul Kalanithi’s memoir, When Breath Becomes Air, with the End of Life Doula Association of Canada. Reading is part of the continuous work that’s needed in this field. That, and discussion.
It’s how death doulas gain wisdom and learn from each other.
Because the profession lacks a regulatory body that’s required for professional birthing doulas, death doulas find each other in various ways. Death doulas outside of national end-of-life associations meet at death cafés, too.
In 2011, Jon Underwood created the concept of people getting together and drinking tea while talking about dying. Since then, there have been over 8,200 death cafés held in 65 countries.
Paul Kalanithi was a husband, father, and neurosurgeon practising in New York. In 2013, Kalanithi was diagnosed with stage four lung cancer. The disease took his life two years later, at the age of 35.
The book is split into two parts, before his diagnosis and afterwards. Each half has a strong emphasis on time; Kalanithi wants to know how much time he has and what to do with it. Once it becomes undeniable that his world is quickly shrinking, he starts to look at time, and everything, differently.
Brandi Bailey is hosting the virtual chat from B.C., where most of the association members live. With over 300 members, Cindie is the only one on Canada’s East Coast. It means the monthly meetings run late for her, but she doesn’t mind. She’s used to working unconventional hours, as death knows nothing of time.
Bailey quotes from the memoir for discussion. “Why me? The answer: why not me,” Kalanithi writes.
“Does anyone have a ‘why not me’ moment?” Bailey asks. “What would make us different from anyone else?”
Cindie doesn’t answer. Instead, she sips her tea and listens to the others. There’s a level of ease to her presence, like it’s something she’s never had to work for. It’s always there; in town as she greets old friends by name, and mid-conversation as she retells quotes by memory. It’s important, she explains, to bring presence to every table.
“‘Why me’ gets you nowhere,” says a woman with short hair and confidence. “How can you find an answer to that? Start asking questions that can help you move ahead.”
Another woman chimes in, “(He’s) the right person to tell this story, with his struggle to give up being a surgeon and just be a patient.”
Cindie puts her tea down, ready to break her silence. “I really think there’s a greater task to be served here,” she says, highlighting the contradictions of the surgeon’s knowledge yet inability to save himself. “Who else could have affected so many people by writing this book?”
Death doulas, like doctors and nurses and other medical professionals, get a rare view of life. They experience the healing and anguish of life and death.
Although, the healing that doulas provide comes from their acceptance of not being able to change fate. It’s how they help others to let go of power.
A doula asks “What kind of life is worth living?” when the video chat glitches. The sudden silence strikes with a chilling uncertainty. The question is left unanswered. And like most things in life, their discussion continues with a ponderous solace.
It’s a deadly summer when Cindie Smith launches Tidal End-of-Life Doula. She’d finished her training in the winter of 2019, just before the pandemic’s reckoning.
Now, the world hides behind the safety of a mask, and handwashing has a natural lifespan of 20 seconds. The news, in a sense, has begun to write itself. “Dozens of new cases announced today, more deaths, state of emergency extends for another two weeks.”
If there’s more to say, you wouldn’t know it.
But it’s also a time of the grim reaper trading his scythe for a cough. Cindie sees her work as an opportunity to help others change their perspectives on death. She looks backwards with clients and discusses their family culture: what does burden mean to your family? Is death talked about? Is it normalized? In the most abnormal of years, perhaps there’s comfort in the perspectives of a death doula. Maybe their grim reaper wears a mask.
“The world’s changing,” Cindie says. “It’s always going to change.” She walks off with a smile.