Our boy Krypto’s 18-year-long poem ended early this month. He was on our porch on the nicest of Atlanta days, with just enough of a breeze to carry spring in for his last breaths. Our sons, Donovan and Tate, ages 13 and 11, whispered weepy gratitude into his ears as he slipped away. A good death for a good boy — a working dog, and his work, as they say, was done.
Much of that work involved needing an ultramarathoner’s worth of exercise, but that kept the IPAs from adding territory to my gut. Krypto also herded other animals and sometimes people, did some occasional protection detail and set the stage for us becoming a family.
The other great work of his life was teaching. He taught my wife and me how to be parents, and he taught our sons the joys of unstructured play and the art of observation. Like Albus Dumbledore, he did his greatest educating in old age, showing our family how to live with infirmities and without self-pity, and in the end, how dying and dead are different things.
My wife, Sarah, and I believed that Krypto was the first great thing we did as a couple. The rescue outfit described the Australian cattle dog-mix puppy as “not much to look at and getting picked on by the other dogs because he was kind of a jerk.”
And he was indeed a hammerhead, early on escaping our yard and chasing a high school cross-country team until he caught the slowest kid. But he quickly responded to training and copious exercise. Krypto explored the north Georgia woods with us and was a witness to our engagement on the Benton MacKaye Trail. His squared-away self convinced us that we were qualified to repeat the experiment; this time with very small humans.
The pee on the pregnancy-test stick wasn’t dry before Krypto relocated his sleeping spot from the dog bed by my nightstand to the floor next to Sarah. He did the same thing when Donovan’s brother, Tate, came around two years later.
The books about dogs and babies urged us to bring a blanket home from the hospital so Krypto could familiarize himself with Donovan’s scent, followed by Donovan. Krypto was unimpressed.
Although Krypto was outwardly ambivalent, each time Sarah got up to nurse, he followed, sitting at her feet and facing the door, acutely keyed in to her vulnerability. He did so again with colicky Tate 2½ years later. The dog was working harder than ever but the boys moved him down in the pack order, just by virtue of being humans.
The transition from stinky, furious blobs to menacing, pokey toddlers to boys who just wanted to throw a ball or Frisbee all day long took dozens of dog years. Along the way, Krypto took down a prowler who came into the house while Sarah was upstairs reading to the boys. The perp was begging for mercy when I got to him, but Krypto greedily held his ankle. Good boy.
Not long after Donovan and Tate became full partners with Krypto, his interest in athletics began to wane. Cattle dogs tend to slow down around age 13 or so. We had a soft old couch that he’d made his own, and the boys liked to bounce on it and wake him for belly rubs or ear scratches. One day their protector snapped hard at them. He was sleeping more deeply and waking up anxious. It shook us up, but the boys were made aware that not everything in life can go at their speed. A little Prozac in Krypto’s kibble helped, too.
Krypto’s decline was the one we’re all hoping for: small increments over an extended period preceding a rapid crash, followed by permanent sleep. My sons received regular lessons in patience. Walks took a while so we had to leave earlier for school. Smell became more important to Krypto than locomotion, so the boys came to understand that a walk often meant standing around while he sniffed the world.
Krypto died with the lab work of a puppy; neurological failings were his undoing. Eventually, his front and back halves had trouble communicating, and he moved like a firetruck tiller with no one driving the back end. He needed help down the three steps to get outside. Cue my sons. They listened for Krypto by the door and were always ready to help him outside and wait patiently for him to find just the right spot before assisting him back up the stairs.
There were the requisite indignities and accidents. The boys helped him up and fetched the paper towels. “Krypto never seems to feel sorry for himself,” Tate said one day while doing exactly that over a pile of crap in the hallway. My sons were paying attention to these lessons.
In his last week, Krypto’s mobility cratered and his anxiety resisted the strongest tranquilizers. He kept us up half the night telling us it was time to let him go. I wanted him to die on his own terms but his mighty heart would not quit. Donovan and Tate heard their father blubber his way through explaining what would be our last measure of devotion.
(The surreal experience of watching one’s father cry uncontrollably has been compared to the first time you see Grandma in a bathing suit.)
Krypto taught my boys to accept decline and mortality, so they had no questions for our vet when she arrived with full eyes. The boys were with Krypto on the porch as the vet eased him from his mortal coil. They are different kids and handled the intense emotions in their own ways, but they were present, holding that dog as he left us, telling him how much he’d be missed.
They fell in love with a dog and, as the contract states, they had their hearts broken. They are better people for knowing him, loving him and losing him.
And in the end, my young men carried Krypto from the house for the last time. I have never been sadder or prouder.
Dying as one wishes has become a luxury. Even though 70% of people would prefer to die at home surrounded by loved ones, most forfeit their future to a windowless hospital room, attached to tubes and monitors. What was once a homebound stage of life has become a lonely, sterilized experience with a host of unfamiliar faces. America, a country founded on rugged individualism and freedom, can’t accommodate even the simplest of last choices.
“Too many people die clinical deaths,” says Beth McGroarty, vice president of research and forecasting for the Global Wellness Summit.
The Global Wellness Institute, a nonprofit organization dedicated to healthy living, identified an emerging trend gaining traction among multiple U.S. age groups. It’s death wellness, in which healthcare experts, academics, and spiritual leaders welcome us to confront anxiety about eternal rest, as well as learn how to support the individual and family throughout the dying process.
Also called the “death positive movement,” it encompasses events, workshops, and new modes of care. Death doulas (sometimes dubbed death midwives) coach those on their deathbed; death cafes gather the morbidly curious to discuss their fears; and legacy projects force the dying to communicate their will and essence. An entire cottage industry has stepped in to make people more prepared to accept their finality, establishing itself as an alternative to the medical establishment’s gaps in care. A good death, some will say, is now part of a good life.
“Everything around dying is getting radically rethought–from making the experience more humane to mourning and funerals getting reimagined,” notes the Global Wellness Institute in its 2019 wellness trends report.
Baby boomers, who invented the wellness industry with their insistence on aging differently, currently lead the movement. They still exercise, listen to rock music, and value their independence. (They also control approximately 70% of all disposable income.) As such, notes McGroarty, their last chapter shouldn’t be any different: “They are basically saying, ‘I refuse to have a terrible death.’”
A break with history
In the 19th century, Americans died in their own homes, which also hosted their wakes and funerals. The Victorian era was obsessed with dying and mourning; numerous rituals memorialized the deceased and absorbed the grieving period. In fact, it was customary to observe the body for up to three days to ensure the dead didn’t wake from a “deep sleep” prior to burial.
That changed in the early 20th century, when more hospitals were being built due to advances in the medical field. Over time, specialized medicine replaced the family doctor. Families no longer saw loved ones day in and day out until the end. The process was outsourced to medical institutions, where patients lacked the emotional and spiritual care previously afforded their predecessors. Death became less familiar and people became more disconnected.
Doctors now concentrate on delaying death and managing pain, with few trained in end-of-life conversations. One survey found that half of medical students and residents report being underprepared to address patient concerns and fears at the end of life. “We train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death,” Junaid Nabi, MD, a physician and medical journalist, recently wrote.
To that end, hospice care was meant to support those battling terminal diagnoses. But in reality, hospice care workers–along with chaplains, social workers, and religious leaders–have little time to tend to the dying. Hospice workers have basically become comfort care, spending just a few hours each week with individual patients. Factor in the loss of religious rituals and cultural practices, and that leaves humanity with little framework on how to console the dying.
In her book Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, author Barbara Ehrenreich bemoans society’s newfound addiction to betterment and medical intervention, a false sense of control that she argues makes dying all the more painful and humiliating. We are anxious about death, paralyzing our ability to actually deal with it.
“You can age ‘successfully’ if you do everything that you’re told, and that dying itself [can] be postponed further and further and further away if again you adhere to all the rules of diet, exercise, medical care, etc.,” argues Ehrenreich. “And that’s a cultural illusion, I would say. We do not control our own health completely.”
The rise of death doulas
Enter the death doula. Introduced in 2003, death doulas, much like birth doulas, fill a gap–in this case, between medical care and hospice care. They emotionally support patients before, during, and after death. Their popularity has soared. The International End of Life Doula Association (INELDA), a nonprofit that offers online programs and weekend workshops, has trained more than 2,000 individuals as well nearly a dozen hospital staffs in under three years in the U.S. Its programs routinely sell out.
INELDA trains individuals how to intently listen to patients and meaningfully discuss death, along with how to develop “a vigil plan” (a blueprint, more or less) for their last days. That might entail everything from where they envision themselves resting to what music or poems they want recited. The doulas spend several hours a day talking to their patients about how they feel about all the oncoming changes, both emotionally and physically. As such, they might institute guided imagery for pain management and personalized rituals. The latter can sometimes be as simple as implementing meditative, silent moments.
Trainees are also taught “active vigiling,” which is support for when the person is dying. The doulas are there to calm the patient and inform the family about signs to expect. “We don’t really understand death and dying anymore in our society,” says INELDA president Janie Rakow. “So people get very fearful at what they see, like breathing changes.”
The doulas are there as much for the dying as they are for the surrounding loved ones. Throughout the dying process, they check in with family members to alleviate their stress. Once the patient has died, they guide the surviving members through the grief process, educating them on the emotional stages to expect and how to practice self-soothing.
The majority of death doulas are volunteers, but a portion are available for hire. Prices range depending on care–they might charge anywhere from $30 to $100 an hour, or up to a few thousand dollars per week. Some work with a family for a few days a week, whereas others might engage in round-the-clock care for the last days.
Today, the death doula is evolving from a niche status in the care community and infiltrating mainstream medicine. The National Hospice and Palliative Care Organization recently formed an End-of-Life Doula Council, and it’s now even acknowledged at the academic level. In 2017, the University of Vermont Larner College of Medicine started the End-of-Life Doula Professional Certificate Program. The eight-week online course teaches students how to “honor the wholeness of a person in their journey,” says program director Francesca Arnoldy, author of Cultivating the Doula Heart: Essentials of Compassionate Care.
Like INELDA, the University of Vermont program focuses on the importance of legacy projects. The doulas collaborate with patients on artifacts, be it a recipe book, a scrapbook, or an audio recording, which speak to who that person is. Doulas act as scribes or mediators, pushing patients to review and find meaning in their lives.
So far, those registered mostly span the medical professional field, such as doctors, nurses, mental health workers, as well as spiritual care providers. They also get family caretakers who want more support tools. Following certification, some are hired by hospitals to complement hospice workers, but most serve as unpaid volunteers.
“We can’t keep up with our waitlist,” Arnoldy says of skyrocketing interest in the program. “The last time we opened up registration, the applicants crashed our system.”
Nothing is certain except death and taxes, and yet our society only ever really talks about the latter. A California HealthCare Foundation survey found that 82% of people say it’s important to write down their end-of-life wishes, yet only 23% do so. And nearly 80% say they should talk to their doctor about end-of-life care–only 7% ever do.
A large theme of death wellness involves simply talking about the hushed-about matter. Festivals, dinner gatherings, and newly founded websites aim to strip death of its taboo status. Reimagine End of Life, for example, is a week-long series of events in San Francisco that delves into the topic through the arts, design, and performances. Though clearly about death, it bills itself as a “celebration of life.”
The Go Wish card game invites players to discuss how they envision end-of-life care options. They rate the importance of statements such as, “not being connected to machines.” The object of the game? “To help you voice these choices.”
There are numerous organizations facilitating hard conversations. Death Cafe, a program which brings people together to “eat cake, drink tea, and discuss death,” has had more than 8,200 events in 65 countries since 2011. Likewise, Death Over Dinner, a nonprofit that organizes shared meals for people to embrace their own mortality, facilitated more than 200,000 dinners, translating to nearly a million people served.
“The more challenging, the more taboo the topic, the more potential there is for transformation and human connection,” says Michael Hebb, founder of Death Over Dinner. “[In America] we have this perfect storm of a broken system that could be improved by open conversation.”
Death Over Dinner attempts to normalize death, giving people the tools to discuss it frankly over some roasted chicken. The online platform provides a customizable script for hosts to engage their guests, most of whom are middle-aged or boomers. The program is partnering with the Cleveland Clinic, in addition to large-scale events with Memorial Sloan Kettering. Most dinners are sponsored by health organizations or religious groups, which welcome guests free-of-charge.
The dinners don’t just attract boomers or those inching closer to the ticking clock. Death Over Dinner sees interest among millennials, who are “incredibly passionate about this conversation,” reports Hebb. Millennials even have their own salon series called The Dinner Party, which coordinates potluck meals centered on death and grief.Lennon Flowers, executive director of The Dinner Party, sees a generation rallying against a “conspiracy of silence” that stripped them of any outlet to discuss the topic. Should someone in their 20s or 30s suffer a family member’s death–or be faced with a terminal diagnosis–the person often had only support groups to turn to. Generally, those consist of much older individuals.
“The reality is they might not go back [to the support group],” explains Flowers. “When you’re the first among your peer group to experience loss, that kind of compounds the isolation and loneliness.” They are perhaps the first in their community to experience loss, but they can’t find adequate support in their own social circles. The Dinner Party aims to fill that role. Since 2014, The Dinner Party grew to 4,000 members who meet regularly at 235 tables. It fields over 100 new member submissions per week.
The beginning of a movementWhile death wellness is mostly an awareness and support movement, some startups have begun commodifying what a “good death” might feel or look like. Megilla, for example, is an online video recording program for the elderly. Described as “legacy-building for the modern age,” the site features more than 500 questions meant to encapsulate a person’s values, hobbies, and stories.
Founder Nathan Firer, a former TV producer, previously filmed the elderly for posterity projects, which ran about $5,000 to $7,000 per client. It wasn’t terribly affordable, not to mention he noticed that clients were usually uncomfortable with being filmed. With Megilla, users can privately answer questions from the comfort of their laptop for $5 a month.
But for the most part, the death wellness movement is made up of volunteers and medical practitioners who have seen firsthand the shortcomings of contemporary end-of-life care. Death Over Dinner’s Hebb sees the pendulum swinging back from medicalization toward a more holistic attitude of death. It’s hit the cultural zeitgeist, he says, “but I think we’re still just at the very beginning.” Awareness of death wellness may be spreading, but its services are still not available in most hospitals, and they are generally not covered by insurance.
In the meantime, those advancing the movement are adjusting best practices for a modern, stressed society. “When you hide something away or when you forget how to do something, there’s a whole lot of wisdom that’s left behind,” says Hebb. “It’s just not a medical act; it’s a human, community act. People are feeling more and more empowered to take back some ownership over these decisions.”