Cancer is nudging me to picture dying in a new way
By Adam Philip Stern
“It was the most peaceful sleep.” That’s how my paternal grandmother referred to the time she was technically dead for several minutes before doctors shocked her back to life. She lived another decade after that, but never once to my knowledge expressed a fear of dying.
As I trained to become a physician-scientist with a focus on neuropsychiatric disorders, I often thought of my grandmother’s description of temporary death. I learned that there were credible physiologic explanations for her to have experienced death as an immensely restful sleep.
It’s an idea that resonates even more strongly with me since I was diagnosed with metastatic kidney cancer. I fervently hope my superstar medical team will help me outrun this disease for many years to come, but I must also face the possibility that I could die young. That initially frightened me in the expected ways. What does it feel like to die? What if I experience a bad death with tubes going into or coming out of every orifice, or my ribs being cracked as doctors try to restart my heart?
A recent experience with an endoscopy to find the source of cramping and vomiting after I ate muted those fears. As I laid on the gurney, the nurse let me know I would soon be getting medicine through the intravenous line: a little something to help me relax, to prevent pain, and to have no memory of the procedure, during which I would be partly awake.
As the fentanyl and midazolam began flowing into my vein, the last memory I had is feeling totally at peace. It was the most content I can ever recall feeling. I am thankful to have never struggled with addiction, but that moment gave me a better understanding of why people seek such a feeling no matter the cost.
What has stuck with me since that procedure is the sense that leaving the world does not have to be gruesome, and might even be the best feeling ever, just like my grandmother described it.
There are, of course, physiologic explanations for why peace may accompany dying.
As the brain begins to adapt to oxygen deprivation, its noncritical regions begin to shut down, turning off for individuals who are actively dying the burdens of complex neurologic tasks like risk aversion, problem solving, and anticipatory worry that weigh on us during our waking lives. While these brain activities keep us alert and feeling attached to our bodies, tamping them down may account for the feeling of lightness, even floating above the body, which many near-death survivors describe.
The classic “death rattle” heard when the body can no longer clear fluids from the airway, often seen as a gruesome sign, is likely a signal of a transition to such a relaxed, unfettered state that the brain is no longer burdened with that task.
The emotional centers within the brain, however, are so deeply engrained in our functioning as humans that they remain on and engaged throughout much of the dying process. That aligns with descriptions of near-death experiences of vivid and realistic interactions with loved ones who have passed.
Even as death approaches and the body and brain are shutting down, there is good evidence to suggest that individuals are aware of their surroundings and can hear and feel the presence of their loved ones. These basic sensations persist in ways that can be a gift to dying individuals, ensuring they are not alone in their last moments — a most common fear.
Palliative care and hospice are stigmatized in our society because they are so closely associated with death, a topic that tends to make people uncomfortable. My attitude toward them has shifted dramatically since my diagnosis. With their focus entirely on providing comfort and maximizing quality of life — even in death — I think they play a most important role and intend to do everything in my power to engage in that process when I need it.
My maternal grandfather died two years ago at the age of 93, just before I learned I had cancer. He used to tell me he “wasn’t afraid of death, just all the things that [he] would miss.”
I think of him whenever something happens to me that would have sparked joy in him, and wish he was still alive. I’m not sure I believed him when he told me he wasn’t afraid of dying, but I do now. What frightens me today has little to do with my death and much more to do with the moments I’ll miss afterwards: anniversaries with my wife, birthdays and graduations with my son, watching my parents age and my brother and other loved ones continue to blossom in their lives.
I can’t say if this perspective will change again. I imagine it will. Death as an abstract concept is probably a lot less terrifying than staring it in the face. But I’ll remember what my grandparents said and try to move forward with the same kind of contented pragmatism they shared with me. In the interim, devoted oncology researchers, my particularly skilled doctors, and I are doing our absolute best to keep these musings firmly in the academic realm.
The author’s sons, Donovan, left, and Tate, with Krypto.
By Mike Mikula
Every poem about dogs ends in tears.
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.
A Victorian-era advertisements for mourning garb.
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.
Americans might avoid dealing with death for other reasons. We are fixated–near obsessed–with wellness and living. Anti-aging rituals, biohacking, and Silicon Valley’s mission to “overcome death” have induced a frenzy which categorizes death as a failure of sorts.
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.”
Talk therapy
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.”
What do you want to happen to your remains after you die?
For the past century, most Americans have accepted a limited set of options without question. And discussions of death and funeral plans have been taboo.
That is changing. As a scholar of funeral and cemetery law at Wake Forest University, I’ve discovered that Americans are becoming more willing to have a conversation about their own mortality and what comes next and embrace new funeral and burial practices.
Baby boomers are insisting upon more control over their funeral and disposition so that their choices after death match their values in life. And businesses are following suit, offering new ways to memorialize and dispose of the dead.
While some options such as Tibetan sky burial — leaving human remains to be picked clean by vultures — and “Viking” burial via flaming boat — familiar to “Game of Thrones” fans — remain off limits in the U.S., laws are changing to allow a growing variety of practices.
‘American Way of Death’
In 1963, English journalist and activist Jessica Mitford published “The American Way of Death,” in which she described the leading method of disposing of human remains in the United States, still in use today.
She wrote that human remains are temporarily preserved by replacing blood with a formaldehyde-based embalming fluid shortly after death, placed in a decorative wood or metal casket, displayed to family and friends at the funeral home and buried within a concrete or steel vault in a grave, perpetually dedicated and marked with a tombstone.
Mitford called this “absolutely weird” and argued that it had been invented by the American funeral industry, which emerged at the turn of the 20th century. As she wrote in The Atlantic:
“Foreigners are astonished to learn that almost all Americans are embalmed and publicly displayed after death. The practice is unheard of outside the United States and Canada.”
Nearly all Americans who died from the 1930s, when embalming became well-established, through the 1990s were disposed of in this manner.
And it’s neither cheap or good for the environment. The median cost of a funeral and burial, including a vault to enclose the casket, was $8,508 in 2014. Including the cost of the burial plot, the fee for opening and closing the grave and the tombstone easily brings the total cost to $11,000 or more.
This method also consumes a great deal of natural resources. Each year, we bury 800,000 gallons of formaldehyde-based embalming fluid, 115 million tons of steel, 2.3 billion tons of concrete and enough wood to build 4.6 million single-family homes.
Mitford’s book influenced generations of Americans, beginning with the baby boomers, to question this type of funeral and burial. As a result, demand for alternatives such as home funerals and green burials have increased significantly. The most common reasons cited are a desire to connect with and honor their loved ones in a more meaningful way, and interest in lower-cost, less environmentally damaging choices.
Rise of cremation
The most radical change to how Americans handle their remains has been the rising popularity of cremation by fire. Cremation is less expensive than burial and, although it consumes fossil fuels, is widely perceived to be better for the environment than burial in a casket and vault.
Although cremation became legal in a handful of states in the 1870s and 1880s, its usage in the U.S. remained in single digits for another century. After steadily rising since the 1980s, cremation was the disposition method of choice for nearly half of all deaths in the U.S. in 2015. Cremation is most popular in urban areas, where the cost of burial can be quite high, in states with a lot of people born in other ones and among those who do not identify with a particular religious faith.
Residents of western states like Nevada, Washington and Oregon opt for cremation the most, with rates as high as 76 percent. Mississippi, Alabama and Kentucky have the lowest rates, at less than a quarter of all burials. The National Funeral Directors Association projects that by 2030 the nationwide cremation rate will reach 71 percent.
Cremation’s dramatic rise is part of a huge shift in American funerary practices away from burial and the ritual of embalming the dead, which is not required by law in any state but which most funeral homes require in order to have a visitation. In 2017, a survey of the personal preferences of Americans aged 40 and over found that more than half preferred cremation. Only 14 percent of those respondents said they would like to have a full funeral service with viewing and visitation prior to cremation, down from 27 percent as recently as 2015.
Part of the reason for that shift is cost. In 2014, the median cost of a funeral with viewing and cremation was $6,078. In contrast, a “direct cremation,” which does not include embalming or a viewing, can typically be purchased for $700 to $1,200.
Cremated remains can be buried in a cemetery or stored in an urn on the mantle, but businesses also offer a bewildering range of options for incorporating ashes into objects like glass paperweights, jewelry and even vinyl records.
And while 40 percent of respondents to the 2017 survey associate a cremation with a memorial service, Americans are increasingly holding those services at religious institutions and nontraditional locations like parks, museums and even at home.
Going green
Another trend is finding greener alternatives to both the traditional burial and cremation.
The 2017 survey found that 54 percent of respondents were interested in green options. Compare this with a 2007 survey of those aged 50 or higher by AARP which found that only 21 percent were interested in a more environmentally friendly burial.
One example of this is a new method of disposing of human remains called alkaline hydrolysis, which involves using water and a salt-based solution to dissolve human remains. Often referred as “water cremation,” it’s preferred by many as a greener alternative to cremation by fire, which consumes fossil fuels. Most funeral homes that offer both methods of cremation charge the same price.
The alkaline hydrolysis process results in a sterile liquid and bone fragments that are reduced to “ash” and returned to the family. Although most Americans are unfamiliar with the process, funeral directors that have adopted it generally report that families prefer it to cremation by fire. California recently became the 15th state to legalize it.
Going home
A rising number of families are also interested in so-called “home funerals,” in which the remains are cleaned and prepared for disposition at home by the family, religious community or friends. Home funerals are followed by cremation, or burial in a family cemetery, a traditional cemetery or a green cemetery.
Assisted by funeral directors or educated by home funeral guides, families that choose home funerals are returning to a set of practices that predate the modern funeral industry.
Proponents say that caring for remains at home is a better way of honoring the relationship between the living and the dead. Home funerals are also seen as more environmentally friendly since remains are temporarily preserved through the use of dry ice rather than formaldehyde-based embalming fluid.
The Green Burial Council says rejecting embalming is one way to go green. Another is to choose to have remains interred or cremated in a fabric shroud or biodegradable casket rather than a casket made from nonsustainable hardwoods or metal. The council promotes standards for green funeral products and certifies green funeral homes and burial grounds. More than 300 providers are currently certified in 41 states and six Canadian provinces.
For example, Sleepy Hollow Cemetery, the historic New York cemetery made famous by Washington Irving, is a certified “hybrid” cemetery because it has reserved a portion of its grounds for green burials: no embalming, no vaults and no caskets unless they are biodegradable — the body often goes straight into the ground with just a simple wrapping.
Clearly Americans are pushing the “traditional” boundaries of how to memorialize their loved ones and dispose of their remains. While I wouldn’t hold out hope that Americans will be able to choose Viking- or Tibetan-style burials anytime soon, you never know.
Images of sandy beaches, sun-kissed swimming pools and azure blue skies gleam from the window and walls of what appears to be a new travel agent opening in a London shopping centre. But browsers may be surprised by the destination, for it is a journey every one of us will one day take: death.
Look more closely at the posters and it becomes clear that the words are all about “passing away” (half of British adults prefer to avoid the word “death”, apparently). The Departure Lounge, in Lewisham, south London, is the brainchild of the Academy of Medical Sciences, whose mission is to promote biomedical and health research. Death, it turns out, is one of the most under-researched areas in healthcare, accounting for less than half of 1% of money spent.
The idea of the Departure Lounge, explains the academy’s president Professor Sir Robert Lechler, is to enable visitors to ask any questions they might have about the dying process, and also to collect ideas and experiences that could inform future research. “The best time to have conversations about death probably isn’t when you’re confronting it, but well before,” he said. Which is why a shopping centre was deemed an appropriate location – the hope is that the Departure Lounge will attract people who might not be regular visitors to science museums.
Death has been a zeitgeist subject for some years now – witness the Death Café phenomenon, the growth of conferences and books on dying and TV series like the recent Ricky Gervais Netflix comedyAfter Life. But, says Lechler, the conversation is becoming more urgent. Put simply, there’s more of it about. “Between now and 2040 we’ll see an increase of 25% in the number of deaths per year,” he said. And it’s more than numbers: the run-up to dying is different. “We’re living longer, and the context of death is changing. Longer life means we accumulate more long-term conditions, and people tend to be frail for longer,” he said. “The risk is that people are going to die badly, as opposed to dying well.”
Dr Katherine Sleeman, a palliative care consultant at the Cicely Saunders Institute at King’s College London and a member of the advisory group behind the Departure Lounge, says patients often want to talk about death. “People call it the last taboo, but that’s not my experience. Healthcare professionals can be fearful about raising the subject, but I find patients are often relieved when it’s mentioned. They know they’re dying, and they want to talk about it.”
Also much misunderstood, she says, is that palliative care, far from spelling the end, can mean much better outcomes. “Research shows that when provided early, palliative care is associated with fewer hospital admissions, better pain relief and lower financial costs to the NHS,” she said. “I always say that my aim isn’t to help you live longer, it’s to help you live better.”
On hand will be guides including Yvonne Oakes, a former palliative care nurse who now works as a “soul midwife” or end-of-life doula, supporting patients and their families. In her experience, many people have had negative experiences of death with relatives, and assume that when their time comes isolation, pain and discomfort will be inevitable. That, she says, simply isn’t true. “There is definitely such a thing as a good death. It comes mostly, I believe, from accepting death rather than struggling against it.” And The Departure Lounge, she hopes, will enable people to start to think about acceptance of death, “in a non-threatening, and unforced, way.”
Research into dying, says Sleeman, really matters and can make a real difference. “Many people, and that includes doctors and academics, say: what’s the point of research if it’s not going to prolong life? But that isn’t the point. Quality is crucial: research is quite clear that most people would choose quality of life over length of life.”
The Departure Lounge is supported by the Health Foundation and Wellcome Trust; more information at departure-lounge.org
Top tips for a good death
Remember this is your death: it’s OK to think about what you really want and don’t want, and be clear about it.
Don’t be afraid to ask for help, and to accept help if it’s offered and you want it. You don’t have to struggle on alone.
Make amends for past hurts and disappointments. Some people write letters – you don’t have to post them.
Consider making a death plan, which is the life-end equivalent of a birth plan. Where would you like to die? Who do you want with you – and who do you not want there? Would you like music to be playing? Do you want to avoid attempts to resuscitate you?
Be aware that death involves loss, so there is inevitably going to be emotional pain, both for you and for those you love. But that doesn’t mean you can’t look for the joys in life, even as your health deteriorates. Life can have meaning and enjoyment right up to the end.
Anne Brescia sits in the room of her only child, Anthony Gabriel Brescia-Connell, who died of cancer in 2011. The hospital sent him home so he could die there with his family.
By Melissa Bailey
Anne Brescia sat beside her only child, Anthony, as he lay unconscious in a hospital bed at age 16. Just a few months before, he was competing in a swim meet; now cancer was destroying his brain. Brescia couldn’t save her son. But she was determined to bring him home.
Anthony Gabriel Brescia-Connell was not conscious for his voyage from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. He may not have heard the parting blessings before a doctor turned off his portable ventilator and let him die naturally.
But having the choice to take Anthony home, away from the beeping hospital monitors, “meant the world to me,” his mother said.
Anthony’s journey was made possible through swift and unconventional efforts by the hospital staff, including a critical care transport team accustomed to rushing kids to the hospital to save their lives, not taking them home to die.
The experience galvanized Harriett Nelson, a nurse on that team who helped arrange the trip. It inspired her to conduct pioneering research on and advocate for “pediatric palliative transport” — a rare but growing practice that aims to give families choice, control and comfort at the end of life.
Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.
These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.
At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.
These trips, which can cost thousands of dollars, are typically offered free to families, paid for by hospitals or charities. Most children are taken home, where they transition to receiving care from hospice staff. Some go instead to hospice facilities.
A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals.
Megan Thorvilson, a pediatrician and palliative care specialist at Mayo, said palliative transport aims to address a gap between families’ preference and reality.
Most parents of terminally ill children would prefer that their child die at home, but most of these children die in the hospital, most commonly in the intensive care unit. Most pediatric ICU deaths happen in a controlled way, following the removal of life support, she said. That means there may be time to move the child to an alternative location to honor a family’s wishes.
Transporting children on life support is risky. At a palliative care conference, a nurse from Children’s Hospital of Philadelphia described the difficulties staff faced in trying to fly a 10-year-old girl home to Michigan. After she was rolled on her side several times to be transferred between vehicles, the child died before the plane could take off.
And dying at home is not what every family wants.
“We do sometimes overly romanticize the death at home,” Thorvilson acknowledged. Some parents would much rather have a child die in the hospital, with familiar nurses at the bedside for medical and emotional support. Some would rather keep this traumatic experience away from where they live.
Brescia, however, said she couldn’t bear to return home without her son.
A biologist who used to run an electron microscopy lab, Brescia wasn’t sure whether she and her husband, Brian Connell, would ever have children. Fertility treatments didn’t work. But on June 23, 1994, seven days before Brescia turned 44, she gave birth to a baby boy.
“Anthony is the love of my life,” said Brescia, who is now 68. “The OB/GYN put him on my chest and I really thought that my heart was going to burst.”
The mother-son bond was especially close: Brescia home-schooled her son for most of his life. Anthony grew to be 6 feet tall, full of curiosity. He loved identifying mushrooms, studied Arabic and oceanography, and aspired to go to MIT. He was an avid swimmer, competing on a team in Belmont, Mass.
One day in late 2010, while racing the backstroke, he became disoriented in the pool and was disqualified.
A neurologist prescribed rest. But over the next two weeks, Anthony grew only more tired and began to lose his balance. On Dec. 20, he was taken to Boston Children’s Hospital and diagnosed with a brain tumor.
The disease “came out of nowhere,” Brescia recalled. “He went from looking incredibly healthy and swimming like a healthy kid” to living at the hospital. At his bedside, she told him she’d bring him home to celebrate Christmas and eat stuffed shells.
His condition deteriorated quickly. The tumor could not be surgically removed. Anthony pushed through radiation and chemotherapy with the hope of going home, but the treatments failed. By late February 2011, the tumor began pressing on his brain stem, and fluid was building up in his brain.
Anthony was unconscious, relying on a ventilator to breathe. Brescia connected with the hospital’s palliative care team.
“I want to bring him home tomorrow,” Brescia told staff.
“I was scared to death he was going to have another incident,” she recalled. “I didn’t want them to do any more invasive procedures to reduce the pressure on his brain.”
Staff from the ICU, palliative care and transport teams scrambled to honor her request. The critical care transport team arranged for the use of its ambulance, a mobile ICU the size of a small bus.
The night before the trip, Brescia said goodbye in the privacy of Anthony’s hospital room.
“I don’t want to lose you,” she told him, holding his hands. “I’m going to let go. I want you to go where you need to be.”
On March 3, 2011, Brescia and her husband boarded the bus along with Anthony, a chaplain, two doctors, Nelson and a nurse from the ICU. They rode 10 miles to the family’s home, where Anthony was laid on a hospital bed in his living room, surrounded by his stuffed animals, on his favorite flannel sheets.
A pastor held a service for Anthony, and close family gathered to say goodbye. Then Brescia signaled for a doctor to disconnect the ventilator.
Anthony seemed to be at peace, Brescia said. After he died, she climbed into the bed with her son and held onto him for a while.
The death was still traumatic. But “it was really a gift to bring him home,” she said. “It was a significant act of compassion and kindness and love on the part of the Children’s staff.”
After Brescia’s experience, Nelson was inspired to offer the choice to more families.
First, she interviewed Brescia and other parents about whether palliative transport had a positive effect. All nine parents said it had. One family described holding a celebration when they brought their newborn baby home, even though he was about to die. They took family photos and used the nursery they had set up, establishing a brief sense of normalcy for four days before he died.
In her 14 years on Boston Children’s critical transport team, Nelson has found that parents benefit from palliative transport for various reasons: At home, they’re away from the noise of the hospital. They have control over who can visit. They feel more comfortable. And they don’t feel rushed after their child dies.
Nelson created a protocol that allows the hospital to offer palliative transport in a more routine way. Now, when children come to any of the hospital’s four ICUs, Nelson said, “we have the power to say, ‘You have a choice when it comes to the end of life.’ ”
The practice appears to be spreading.
After Lindsay Ragsdale, the physician who is director of the palliative care team at Kentucky Children’s Hospital in Lexington, presented her protocol for palliative transport at a conference last year, staff from 20 hospitals asked her to share her checklist, she said.
Mayo’s Thorvilson, who has worked closely on a half-dozen palliative transports, said it’s possible these last-minute trips from ICU to home could be avoided by earlier referrals to hospice, which might get kids home sooner. But when children with complex illnesses get sick, she said, “sometimes it’s hard to know whether this is just another bump in the road, or whether this is the natural end of the child’s life.”
“There’s something really unique about a child dying,” she said. “Everyone’s heart breaks, and we want to be able to do all that we can to be able to support the family in the midst of the tragedy.”
Eight years after Anthony’s death, his bedroom remains untouched, his socks still folded in his top drawer, swimming trophies on the cabinet, slippers under his chair. Pictures of him adorn every room in the house — on the fridge, the kitchen table, the living room stereo.
Looking through photos one recent morning of her son fishing and blowing out birthday candles, Brescia struggled to hold back tears.
“I couldn’t cure him,” she said. “I failed to protect him from a tumor — that’s how you feel. They did all they could. It wasn’t enough. Bringing him home was the best I could do.”
Nurse practitioner Nikki Johnston has been awarded the inaugural Health Minister’s Award for Nursing Trailblazers.
By Steve Evans
Nikki Johnston is passionate about dying.
She’s just won a big prize as Australia’s most innovative nurse. It was a recognition of the way she is changing the way the elderly end their lives.
Her mission as a nurse in Canberra is to help people have what she calls “a good death”.
She says too many people have “bad deaths” where fear and loneliness dominate their last moments.
Her radical idea is to involve people who are in their last months in the planning for those final fearful moments. The dying attend meetings where their own deaths are discussed.
She says a rigorous study of the results of the new system demonstrates clearly that it is a better way, and she’s pressing politicians to adopt it in the rest of Australia and beyond.
She also thinks there is too much emphasis on research to prolong lives at the expense of spending more to ensure that people die in peace at the right age.
Ms Johnston is a “nurse practitioner” who works in palliative care – it’s the most senior type of nurse, qualified to diagnose illnesses and prescribe drugs and treatments.
She has a missionary zeal for involving the patient in (arguably) the most important process affecting them – their end.
In the residential homes where the system is now used, the dying person attends the meetings and hears how their death will be dealt with. Their views are listened to and acted on.
“If we don’t ask the questions and give people the opportunity to talk about the end of life, we risk isolating people in their last months,” she says.
“They feel like no one gets it – no one understands – what’s going on, and that can be frightening.”
Researchers have studied 1700 people in the ACT at the end of their lives, comparing those where the system is in operation and those where it is not.
The study – the first of its kind in the world – involved rigorous measurement of a raft of variables like how soundly people slept in their last months and how much medication they needed.
The researchers devised a “quality of death” index. Ms Johnston says the results show that the new way works.
She argues that there should be a switch from maintaining uncomfortable and painful lives to the quality of death. “People are living longer but their quality of life is reduced so they are not living well enough or dying well enough,” she says.
“We are not valuing the end of life because we are not putting money into it.”
With the new system, people aren’t told bluntly that they are dying.
Ms Johnston says that she might have a conversation with a resident of an aged care home and ask them how they saw their future. In that conversation, the old person might well say that they thought they were dying.
“I ask them where they are at, what’s important, and most people tell me they are dying,” Ms Johnston says.
“If they are leading this conversation, It’s not confronting. They have taken us there.”
“Gently, we normalise death and dying. We help the staff to be able to talk about it. We support the relatives and loved ones through the process.”
She said that the elderly people she deals with generally don’t fear death. “Most people are ready. They are sick and they’ve had enough. They are ready to go.
“To help someone in their last months of life, we need to know them – to sit with them and talk to them. We need to know what’s important. How do we get this right for the person?”
That is what happened, for example, with Chris Dillon, whose death on March 29, 2017 was peaceful, according to her daughter Rose.
Chris Dillon and family dog, “Dublin”.
The aged mother had been in a residential home in Ainslie for just over two years.
According to her daughter, Mrs Dillon said one day that she felt tired and she was close to the end of her life.
Once that was recognised, the palliative care team became involved.
“She was a pragmatic person,” Rose says.
“She wanted to know what it would feel like, would it hurt, how would people know that she was dying. What would they do with her body?
“And then Nikki came along. She sat down really close to Mum and said: ‘I’m Nikki. I’m from palliative care and we need to talk about some things’.”
According to Rose, her mother simply replied: “What? About me dying?”
“So the conversation started naturally,” she says.
“The impact that Nikki had on Mum’s death was massive. It allowed Mum to have a peaceful death.
“She wasn’t frightened.”
The new system involves staff keeping a kind eye on residents
At the Calvary Haydon Retirement Community in Bruce, for example, manager Kim McGovern says she and her staff quietly look at residents every month to see “who might not be there next month”.
Kim McGovern of Calvary Haydon Retirement Community in Canberra.
Once people are identified, they are talked to sensitively.
An “individual care plan” is drawn up with the involvement of the resident.
“It’s their choice. We involve them early on,” Ms McGovern says. “It’s their last journey.”
The involvement of the dying person allows proper preparation, both medically and emotionally.
This means a final crisis, in which the patient is rushed to hospital to die in a chaotic emergency, is less likely.
Ms Johnston is an extraordinary character – bright and vivacious (at least when she’s expounding on the importance of helping people have “a good death”).
She may have dark moods, in that she says she needs to put her “armour” on before she attends some deathbeds.
And she does cry – after all, she’s got to know the person – but, as she puts it, “this isn’t my grief”.
