As Claire was still processing the news, she knew she had to figure out how to tell her five daughters — in particular her eldest, who was 10.
She says she didn’t want to overload anyone with “disastrous devastating news” around being terminally ill.
So, the Sunday after receiving her diagnosis, Claire made fresh pancakes and told her children gently over breakfast that she was starting chemotherapy again.
“I said, ‘Mummy’s going to have to do chemo again’.
“My oldest was at the end of the table and she was very, very quiet, just processing it. [Then] she says, ‘Does that mean your cancer’s back?’ And I said, ‘Yes’.”
Claire says it’s been especially hard for her children and partner to process her diagnosis.
“[My eight-year-old] was crying [one] night and I said, ‘What’s wrong? And she said, ‘I don’t want a new mummy’,” Claire says.
“I said, ‘I will always be your mummy, that’s never going to change’.”
Clinical psychologist and director of the Death Literacy Institute, Kerrie Noonan, has spent her career helping people feel more comfortable talking about death.
She says it can be hard to explain it to children, especially when they’re young, but her advice is to talk openly.
“For young children, grasping death as a permanent thing is an important part of their grief,” Dr Noonan says.
Religion or spirituality can be a source of comfort when it comes to grief but helping children grasp the physical process is just as important.
“Often our inclination is to say to kids, ‘When I die, I’m going to heaven’,” Dr Noonan says.
“It’s not concrete enough for a young child to kind of understand.”
“So, [instead you might say], ‘When I die, my body stops working, I won’t have any pain anymore and my body will be buried’,” she says.
Claire’s still trying to work out the best way — and time — to tell her kids she’s terminally ill and says it’s been an overwhelming experience preparing her family for her death.
One thing that is helping her is creating special keepsakes for her daughters to cherish.
“My big girls will remember, I know they will but the five, three and one-year-old is a different story of what memories they’ll hold on to,” she says.
“I want to write a letter to them all individually, about how much I love them [and] funny little things their dad might not remember.
“I want to write a list of ‘Mummy’s advice’, for when they are older, but I’ll definitely be putting the aunties on the ‘period talk’ because I don’t trust their father,” she says, laughing.
Talking about death with your partner
Claire also worries about her husband and how he’s coping with all the changes.
“He’s not someone to dwell on the negative, so it’s really hard to get him to open up,” she says.
“We’ve had moments where we will grieve together, [but] he doesn’t talk about it, not even with mates.”
Avoiding discussion is a common way some people cope, but Dr Noonan says the best way through it is trying to being open with each other.
“I guess the first thing is to acknowledge just how bloody hard it is,” Dr Noonan says.
“[We think] ‘Oh she’s got enough to worry about, I can’t talk to her about how scared I am about the future, so I’ll just suck it up and keep going and same [goes] the other way’.
“Everyone’s protecting everyone, but no one’s actually talking and that can be one of the biggest barriers.”
After going through intensive treatments like chemotherapy, intimacy is often the last thing on a couple’s mind, but Dr Noonan says it could provide the comfort and sense of relief that the relationship is longing for.
“People may not want to feel like having sex as such, but they may really still have that great need to touch, connect and have comfort from that touching and connecting,” she says.
Claire and her husband find it hard to talk about the future, but something that’s helping them is focusing on the present.
“We focus on making memories,” she says.
“My husband gets through it by planning extravagant trips in his mind … he bought his own calendar to write down where we’re going and put [down] every country.
“[He] is super optimistic and it really kind of keeps me together,” she says.
‘I allow myself to be sad, but I don’t let it overcome me’
Claire’s been given a life expectancy date by her doctor, and she says there are days where she feels anxious about it.
“My oncologist ended my appointment with a ‘you better make holidays this year’ and that’s a real downer but it’s also a reality,” she says.
To help ease some of the anxiety, she takes antidepressants, but it’s her family who help her through those difficult days.
“I allow myself to be sad, but I don’t let it overcome me,” she says.
“I’ve got ive girls who need me, and they are the ones who make me get out of bed and try to keep [life] as normal as possible.”
The end of life is often invisible, shut away in nursing homes or intensive-care units. There’s another way.
By Sara Harrison
My grandfather liked to stage a scene. He moved to California in 1935 to work in Hollywood, becoming a director for B-list movies and TV shows like “77 Sunset Strip” and “The Mickey Mouse Club.” Despite his work, he didn’t particularly care for film and didn’t own a TV until 1964. Even then he mostly used it to watch Dodgers games. What he liked was the process of making a show: reworking the script, setting the angles, being in charge.
Like so many in his generation, he was a multipack-a-day smoker; a Philip Morris cigarette hangs from his lower lip in nearly every photograph I have of him. He lived with emphysema for decades, maintaining his last sliver of healthy lung tissue through a combination of lap swimming, walking, Scotch and luck. But at 97 years old, he had flagging energy. No longer able to walk from his bedroom to the kitchen without stopping to catch his breath, he rigged up an oxygen tank that allowed him to roam the length of his home. Tubes followed him up and down the corridor.
For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear.
Death is, famously, one of the few certainties in this life. It’s also a reality that doctors, patients and families tend to avoid. In a recent report, The Lancet Commission on the Value of Death notes that today death “is not so much denied but invisible.” At the end of life, people are often alone, shut away in nursing homes or intensive-care units, insulating most of us from the sounds, smells and look of mortality.
Not so for my grandfather. Though he didn’t rush headlong into the hereafter, he didn’t want to wait for his faculties to fail one by one. He wanted to die with a modicum of independence, with hospice care.
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On an unseasonably warm Los Angeles day in May 2011, a cast of characters — his children, grandchildren and friends — assembled at his home, ready to play their part in the last act of his life. I was a college junior at the time, required to read Coleridge’s “Kubla Khan” for class that week. I found it in an English poetry collection of my grandfather’s and read sitting on a sagging couch, intermittently distracted by family members who, one by one, came in and asked what I was doing. They’d smile and recite the opening lines: “In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea.”
What ensued was a five-day tropical vacation. My grandfather couldn’t stand the air-conditioning, so we wore bathing suits most of the day and paged languidly through withered photo albums. I floated in the sacred waters of my childhood — the swimming pool — and harvested lemons from the prolific backyard tree. When 6 o’clock rolled around, my grandfather would ask, “Who’s pouring me a Scotch?” Cocktails, cheese, olives and stale water crackers appeared. We listened to classical records and told stories and took turns cooking dinner. But just as Coleridge’s vision faded, interrupted by a person from Porlock, our reverie was splintered by closed-door meetings with hospice nurses and conversations with doctors, who could attest my grandfather had a sound mind and a failing body and was eligible for end-of-life care.
However perverse it may sound, that death party — as my sister and I came to call those five days — remains one of the most profound experiences of my life. For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear. Amid that joyful reverie, I had time to sober up and confront the simple reality that my grandfather wanted to die and that everything would change. I saw that the man who had commanded movie sets and TV crews now rarely left his house. That his sweaters hung loose on his stooped shoulders, and that his rosebushes withered with neglect. That things were already changing, whether I was ready for it or not.
People often talk about death as if it’s the worst thing that can happen to someone. As if it’s something that must be avoided at all costs. Better to age, however painfully, however diminished, than to ever admit that we are mortal. But at the end of a long, full life, my grandfather was done. He died with power and agency, love and support. To have that death, he had to acknowledge and embrace his mortality. At our death party, he gave his family a chance to accept that fact, too.
More than a decade later, my parents are discussing their own plans, debating whether to be cremated or buried. My dad calls to talk about what I want. Would I visit their grave sites? Would that be meaningful? There are no monuments for my grandfather, whose body was eventually cremated and scattered at Evergreen Cemetery in Los Angeles. When I miss him most — when I married, or when my nieces were born — I pay homage with a cocktail, a toast and a memory. I think about one evening during the party when, as the room hummed with humans, he held my head in his hands. A few days later, he had his usual Scotch, went to bed and died. In my memory, this moment — the moment when we looked at each other, when we said I love you and when we let each other go — lives on. It comforts me when I pass through caverns of sadness and am marooned in sunless seas of grief. I tell my parents I don’t need them to have a grave site.
When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.
What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.
But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.
Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.
Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.
Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.
The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.
One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.
Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.
More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.
“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”
Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.
His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.
Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”
While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies.
“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.
In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.
TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.
The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.
“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.
Another factor is that kids, even sick ones, are simply more robust than many older people.
“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”
All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.
When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.
Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.
“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”
Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.
The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.
Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.
In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.
Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.
When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”
About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.
“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”
Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”
Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.
Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”
Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”
Because she reigned and lived for so long, seemingly immutable and immortal, the death of the British monarch after 70 years on the throne and 96 years of extraordinary life was a reminder, in Britain and beyond, that mortality and the march of time are inexorable, waiting for neither man nor woman, even a royal.
Some have called bereavement counselors for solace and said her departure has rekindled grief for others they loved and lost. And Britons acknowledge that they sometimes struggle with the emotions of loss. “We don’t necessarily do grief and bereavement that well,” says Lucy Selman, a professor of palliative and end-of-life care at Bristol University.
British bereavement experts are hoping, however, that the queen’s death and its manner — at home, with family, in her beloved Balmoral Castle — might also spur a national conversation about the sometimes awkward relationship that Britons have with dying. In the process, the experts hope, it might prompt them to better prepare for the inevitable.
“If we are going to die in a way that we hope is peaceful, comfortable, and satisfying for us, we have got to do what the queen did: Recognize that it is going to happen at some point and put some plans in place for what we want and what we don’t want to happen,” says Kathryn Mannix, author of “With the End in Mind: How to Live and Die Well.”
Mannix has witnessed thousands of deaths in her 30-year career as a palliative care physician. She says it became clear in the last two years of Elizabeth’s life that she was dying. She recognized familiar patterns — in the slowdown of the habitually frenetic queen’s schedule and the preparations she made.
Duty done, the queen died two days later. Mannix was reminded of other deaths she encountered in her medical career, of people who clung to life “to hear the news that a baby has been born or an exam has been passed” and who then relaxed “very quickly into dying.”
“There is nothing at all disrespectful about recognizing that even our monarchs are mortal and that what happens at the very ends of people’s lives is a recognizable pattern,” Mannix says. “We perhaps can use this as an occasion to start to think about knowing the pattern, being able to recognize the pattern, being able to talk to each other about the pattern — not being afraid of it.”
>Described by the government as “a period of time for reflection,” the 10 days of national mourning decreed for Elizabeth’s passing are also, unavoidably, giving dying, loss and bereavement starring roles in the wall-to-wall media coverage of the queen’s life and times.
Bereavement experts say the rituals of communal grieving and the mourning period — practically an age in the swipe-and-tap era of short attention spans — are an exceptional and important opportunity for Britons to adjust to the loss of a queen and the gaining of a king, and to process the emotions and anxiety that enormous change sometimes brings.
For young people, “this might be first time that they learn about the finality of life and what that means,” says psychologist Bianca Neumann, the head of bereavement at Sue Ryder, a British charity that offers support through terminal illness and loss.
“We never really look at the end of life like that, unless we have to,” she says. “It would be nice as a nation if those conversations could become more mainstream.”
Psychotherapist Julia Samuel, who was a close friend of the late Princess Diana, is urging Britons to pause and digest their loss. Posting on Instagram, she said that “if we just keep going and doing what we normally do, our brain isn’t given the information to let us know that something very big has happened.”
“The task of mourning is to adjust to the reality of a death,” she says. “To do that, we need to let our brain kind of slow down.”
To be fair, British conversations about death and loss have taken place for centuries. In “Hamlet,” Shakespeare had his prince muse famously about the human condition, clutching the skull of Yorick, a court jester.
“Alas, poor Yorick! I knew him,” Hamlet mourns. “Where be your gibes now? Your gambols? Your songs?”
“It’s now much more acceptable, and indeed a lot more healthy, to ‘let it out,’” he says. “That has changed in this country, because there was a time when that was distinctly a sign of weakness.”
Still, Britons concede that they could do better in helping others and themselves through bereavement. Sue Ryder last year launched a “Grief Kind” campaign, to help people find words when those around them lose loved ones.
Selman is a founding director of the “Good Grief Festival,” started during the COVID-19 pandemic to break taboos around dying. She hopes mourning for the queen will produce “a bit more awareness and an ongoing discussion about bereavement and loss and our social attitudes towards it.”
“There’s a conversation to be had about what a good death is,” she says. “And what we can do to try and ensure that we have the death that we want.”
Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver
by David Meyers
My wife and I usually don’t keep houseplants. Anything in pots gets either overwatered or underwatered. After my diagnosis with glioblastoma — a terminal brain cancer with a prognosis of little more than a year to live — I loved the idea of having something new and green and alive around us.
When my friend Mitch gave me a lucky bamboo plant in a deep-green pottery bowl with three pencil-size stalks braided together, we decided to place the plant in the living room window across from the couch where I spent much of each day.
I smiled when I looked over the rim of the mug of coffee Hannah brought me each morning.
I told Hannah I wanted to care for the plant myself. When it didn’t immediately turn yellow or brown or lose all of its leaves, I was pleasantly surprised.
Tending to the plant gave me a sense of accomplishment at a time when I sometimes felt useless. Glioblastoma limited my ability to walk, and the treatment left me fatigued, making it hard for me to accomplish everyday tasks.
Being dependable again
As a physician, I was used to being the one who provided care, not the one who received it. Since my diagnosis in August 2018, far too often, it seemed, I had to rely on help from other people. The enormous change left me feeling adrift and unsettled. Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver. Plants and people could still depend on me.
Over the next few months, I recovered from surgery and completed radiation and the first round of chemotherapy. Even after I returned to work, I continued to care for the plant. Soon, it had nearly doubled in height and its leaves were shiny and lush. Both the tree and I were thriving.
Then, mysteriously, it began to show signs of stress. I increased my watering, then decreased it. I nestled coffee grounds into the soil. I fed it commercial plant food. No matter what I did, the leaves kept browning and dropping to the floor. I grew more and more frustrated and uneasy.
“I can’t even care for a simple plant!” I yelled. “I’m failing!”
Hannah reminded me that we’d seen houseplants die before. She asked me why I was getting so worked up about this particular one.
“If my lucky bamboo dies,” I blurted out, “I might die, too!”<
I couldn’t shake the feeling that the plant had become a symbol of my own precarious health.
Solace and control
Identifying with the green and growing plant had offered me solace. Now that the tree was struggling, I felt increasingly fearful. Its shriveling leaves, I worried, might signal the recurrence of my brain tumor.
I realized I had wrongly connected my careful nurturing of the plant — something over which I had at least some control — with my own survival — something over which I had no control.
When my tumor inevitably returned, it would not be because of any failure on my part — not because I didn’t atomize essential oils in my office, not because I ate sugar occasionally and certainly not because I failed to keep this plant alive.
As my anxiety lessened, I began to pore over online tutorials to help me figure out how to care for my bamboo. Following the instructions, I transplanted the tree to a larger pot, untangling its roots to give it room to grow. When it was back in the sunny window, we both began to thrive again.
Whenever I look at the tree with its braided stalks in its new pot, I make a point to think of Mitch and the other people who have cared for and supported me. If the lucky bamboo outlives me, I hope it will comfort Hannah and remind her that our large community will continue to nurture her after I am gone.
Need emotional or spiritual support at the end of life? Hire a death doula.
By Jessica Hall
When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.
Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.
“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.
Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.
There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.
Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.
Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.
“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”
“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.
“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”
Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.
“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.
The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.
“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”
“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.
Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.
Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.
“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.
“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”
When we think of how we’ll be remembered after death, it may seem that simple words and basic descriptions don’t do us justice.
But for parents with a terminal illness and those on their deathbed, plain language is sometimes best.
“Dad was an artist. He painted the world that he saw. People loved his drawings.”
How else do you tell your life story — or explain death — to a young child?
Alice Matthews knows something of the challenge of putting a life into a story.
Since 2017, the SBS and ABC journalist has volunteered as a biographer with the Sacred Heart Community Palliative Care Biography Service based at St Vincent’s Hospital in Sydney.
The work involved sitting by the bedsides of the dying and, over a series of sessions, recording their stories.
For Alice, bearing witness to people’s lives, crying along with them, helping them grieve, reflect, and consider their legacy was an enormous privilege.
“We talk a lot in the service about holding space for someone,” she told RN’s Soul Search.
“There is an incredible spirituality in doing that, sitting with somebody, being with them and not really having to say or do anything except that.”
Death: the storybook version
Alice mostly saw elderly clients, part of a group often “shunted and pushed aside” by the wider world.
“What better way to return value to them than to sit and talk about their life and the value of their life which hadn’t disappeared,” she said.
Such clients often met their deaths with acceptance or comfort in their various religious and spiritual beliefs.
Others died “before their time”, as we would say.
If they had young children, Alice would put together a “storybook” version of their dying parent’s longer biography.
For one client, a dad with a young daughter, Alice worked with the family to come up with a child-friendly “circle of life” explanation of death.
“I remember sitting in the room with them as the wife read it to her husband. That was one of the moments where we all sat there in tears,” Alice said.
“I didn’t know how he would react. He wasn’t verbal at that point.
“We waited a moment and then saw that he’d typed: ‘That was beautiful.’
“That was one of those moments where you feel the entire weight of the heartbreak — but also the relief.”
Once upon a time
Another writer who understands this struggle to give language to death is author Chloe Hooper.
Chloe’s partner Don Watson, the historian, author, and speechwriter, was diagnosed with an aggressive form of leukaemia in 2018. Things looked grim.
Then there was the uncertainty: how to explain his possible demise to their young sons — Tobias, then six, and Gabriel, three at the time.
Few age-appropriate titles on the shelf seemed right. So, Chloe embarked on a quest to find the perfect book.
“The right story can help us find a path through the forest. It can help us take our straw and weave it into gold,” she said.
“Quite quickly, I realised that storytelling and perhaps re-storying this situation would be a way to help us through.
“The electricity and potential of ‘Once upon a time’ might be a way for us to light the dark.”
Chloe’s search for the best words to explain death — recounted in her book Bedtime Story — turned up the innumerable ways in which adults have explained death to children.
Grief and enchantment
Along the way, she made a surprising discovery: beloved children’s authors had suffered significant bereavement in their lives.
Roald Dahl, for one, described himself as “limp with despair” as he began writing Charlie and the Chocolate Factory after losing his seven-year-old daughter.
Dahl wasn’t alone. The Brothers Grimm, Hans Christian Andersen, J R R Tolkien, Frances Hodgson Burnett, C S Lewis, J K Rowling — death had touched them all.
Writing couldn’t overcome death, but it seemed a comfort in the face of it.
“It made me realise that an ingredient of enchantment is grief,” Chloe told me, referring to the often magical settings of the stories penned by those writers.
What she was looking for — the perfect story to tell her children about death — “was embedded in all of the stories that surround us.”
Mythic narratives similarly stalked the border between life and death, Chloe noticed.
Descent and return narratives saw characters like the Greek hero Odysseus — and even religious figures like Jesus Christ — descend to the dead before returning to the land of the living.
These stories, and their authors, couldn’t help but stray into spiritual territory.
For Tolkien, fairy tales were ultimately about escaping death. C S Lewis, author of the Narnia series, found himself a Christian after becoming convinced that the story of Jesus Christ’s death and resurrection was what Tolkien called a “true myth”: the fairy tale that came true.
‘Everything will be alright’
Plenty of people — including Chloe Hooper — are agnostic about that.
But every parent knows it’s their job to protect their kids. According to the late sociologist and theologian Peter Berger, “to become a parent is to take on the role of world-builder and world-protector”.
For Berger, this makes parents practically godlike.
Parents represent “the underlying order of the universe that it makes sense to trust,” he writes in A Rumor of Angels: Modern Society and the Rediscovery of the Supernatural.
Take the most basic parenting move: hushing a crying child in the dead of night. For Berger, when a mother rocks her bub, murmuring “Everything will be alright,” she relates to her child the way we imagine a god should relate to their creation.
Even the most ardent skeptic gets that a god’s job is to guarantee order and safety and beat back the encroaching darkness.
This casts new light on the stories we spin about death: from fairy tales to storybook versions of the “circle of life”.
What are these if not our attempts to love those we must eventually leave? Our efforts to weave out of the world’s sadness a life-giving spell?
Perhaps we’d rather not read the stories of our lives that get written on our deathbeds.
But even if such stories are prompted by the most decisive of endings, they pulse with love and concern for the living left behind.
Death doesn’t exactly get the last word because these stories are, in the end, about life.