Death may be the great equalizer but the availability of good end-of-life care is rarely equitable. Now, a new mobile palliative care program designed to address that inequity is providing care and dignity to people with life-limiting illnesses who are homeless and living in poverty in Victoria.
The Palliative Outreach Resource Team (PORT) is a collaboration of the University of Victoria, Island Health, Victoria Cool Aid and Victoria Hospice. PORT acts as a bridge between people with serious illness and their caregivers, palliative care, and other health and social support systems.
The program is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging & Lifelong Health and the School of Nursing. The study followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. The 2018 report Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. The big takeaway: despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care actually experienced an improvement in quality of life.
For PORT’s first year, the clinical team will be funded by Island Health and Saint Elizabeth Health Community Enterprise, a social enterprise with a commitment to end-of-life care for marginalized communities. Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who provide whole person care, manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty.
The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city. The PORT team, which began service in July, has supported three deaths and is currently supporting seven people who are dying.
“For almost a decade, providers in our community have cobbled together resources to meet the needs of our clients who are living with unmet palliative needs,” says Grey Showler, director of health and support services at Cool Aid. “We are thrilled to see PORT come to life.”
“Over the next year, we will be implementing this model of palliative care in collaboration with organizations and people who have expertise in care and support for homeless and vulnerably housed people at end-of-life including street families,” says Jill Gerke, director of the palliative and end-of-life care program with Island Health. “We are using research and promising practices to inform the development of this model adapted to our community that bridges existing support and services.”
“Palliative care isn’t a ‘thing’ or a ‘place’ but an approach that focuses on whole-person care for the person, their family and community. This approach necessitates a community response where everyone sees their responsibility and their part in care for dying people,” says Stajduhar.
Evie Vargas had always been drawn to death. That sounds morbid, or possibly extremely goth, but her interest wasn’t in the afterlife nor the aesthetics. Vargas wanted to pursue a profession rooted in service, and entering the death care industry was a calling — an inexplicable calling that, once she began work, seemed like destiny.
Throughout high school, Vargas considered attending mortuary science school, but worried she wouldn’t be able to handle the sight of a dead body. Still, she knew that a two-year program could lead to an associate’s degree, an apprenticeship, and eventually a mortician job.
To gauge her nerves, Vargas decided to go to a place that would expose her to death firsthand: a funeral home in Illinois.
There, she shadowed an embalmer, who offered her a part-time job after their first session. “He said he saw something in me,” Vargas says, still amazed at how prescient the offer turned out to be. “I didn’t have a license to embalm so I did makeup, dress, and casket.” She’s worked there since graduating from mortuary school.
Even after eight years in the industry, makeup and hair is still a special part of her job, Vargas says. As a funeral director, she does “basically everything” — administrative work, service preparation, meeting with family members, embalming bodies. But she thinks mortuary makeup work is uniquely intimate and significant.
Makeup plays a starring role at many funeral services — the last time family members will physically see their loved ones before the casket is closed. These services are usually done by a certified embalmer, a person tasked with cleaning and preparing the body, who takes on the burden of replicating a person’s likeness and essence. Makeup artists — whether embalmers, funeral directors, or freelance workers — find meaning in this ritualistic work of dressing a body, mulling over the details of its presentation, and receiving input from the family. It can help loved ones grieve, artists say, in remembering a person at their best.
Embalming a body and applying eyeshadow seem to demand different skills, but the work contributes to the body’s final presentation. Embalming is typically the first step; fluids are injected into a body during the process to slow its decomposition for the funeral ceremony.
According to the Funeral Consumers Alliance, the process could give the body a more “life-like” appearance, although it isn’t always required. Amber Carvaly, a funeral director at Undertaking LA in California, doesn’t think embalming is necessary for most natural deaths, although it might firm up the skin more. She says that applying makeup on a body isn’t drastically different than working on a living person.
Carvaly has an array of products in her makeup kit — typically thicker theatrical makeup for discoloration or jaundiced bodies — but drugstore brands like Maybelline Cosmetics work fine. There are little techniques and tricks she’s picked up, for example, in applying lipstick on a dead person’s lips, which are much less firm.
She uses a pigmented gloss or mixes a dry lipstick to paint the color on. Vargas prefers using an airbrush kit for a more natural look, since it provides full coverage and is easier than applying foundation.
Carvaly doesn’t work with bodies as much as she likes to anymore, ever since cremation overtook burials as the preferred means of after-life care in 2015. While there is no proven correlation between price and popularity, cremation is cheaper than a burial. According to the National Funeral Directors Association (NFDA), the average burial and viewing costs $8,508, while the average cremation and viewing comes out to $6,260.
Post-death makeup is only a fraction of the cost for burials — an average of $250 per funeral, according to the NFDA — but the added costs aren’t worth it for some, Carvaly says. Many families struggle emotionally and logistically in the aftermath of a death, she adds. The logistics that go into the burial ceremony, especially dress and makeup, are often the last things on their minds.
A common complaint from families is that a body doesn’t look like their living relative. The embalmer might have parted their hair differently or used an unfamiliar lipstick color. Carvaly points out that family members can do makeup on their loved ones before the body is sent to a home. But if they’re uncomfortable with that, she encourages them to assist the embalmer with the makeup and presentation.
“Doing makeup with the family present is extremely rewarding,” she says, adding that family members’ input makes it much easier to capture the aesthetic essence of a person. It’s helpful for the families as well: “When you’re grieving, having a physical or artistic activity can help walk you through it.”
Years before Carvaly went to mortuary school in Los Angeles, she worked as a cosmetologist on film sets. She’s changed careers multiple times — from makeup to nonprofit work to the death care industry. Like Vargas, Carvaly is dedicated to the service aspect of her job, and she sees makeup as a physical manifestation of that service.
In her seven years of work, Carvaly’s found that most people are uncomfortable in the presence of a dead body, even in preparation for the burial. “I’m more than happy to do makeup for a family if this is something they don’t think they have the strength to do,” she says. “But I want them to know that they have options.”
On rare occasions, she brings along makeup or hair tools for families to touch up their loved ones at the service. She once worked on a woman with blonde, beehive-style hair that she struggled to recreate. At the funeral, Carvaly suggested that the woman’s daughters help her touch it up — a request they were initially shocked by.
“Allowing people to be a part of the funeral is important,” Carvaly says. “Keeping that veil of magic up prevents regular people from doing something very valuable.” Families shouldn’t hesitate to ask a funeral home if they can do their loved ones’ hair and makeup, which could reduce costs, she says.
Shifting social norms and new funeral practices, like eco-friendly burial options, have driven homes to find ways to increase profits — often at the expense of families, who are missing out on an opportunity to properly grieve, Carvaly explains.
“There is no law that prohibits people from coming into a home and requesting that they do makeup on the deceased,” she wrote in an e-mail. And while Carvaly feels that her job is a calling, the daily human interaction can be taxing. The most difficult part of being a funeral director, she says, is explaining why people have to pay for certain services that the home offers.
It’s what upsets people the most, but homes also have to pay for overhead expenses — the indirect costs of operating a business. Carvaly’s funeral home, Undertaking LA, opts to rent time and space from another crematory.
Carvaly’s funeral home co-founder, Caitlin Doughty, has found unprecedented success on YouTube under the account Ask A Mortician, a series where Doughty takes questions about her work and about death.
Demystifying death is a big part of Undertaking LA’s mission — to put the dying person and their family back in control of the dying process and the care of the body. It’s a liberal “death positive” approach, one that Carvaly likens to “breaking down the walls and windows” of a rigid centuries-old industry. Vargas feels similarly, and tries to destigmatize the death industry on her YouTube channel.
After a death occurs, families often immediately send the body to a funeral home and don’t interact with their loved ones until the ceremony. And sometimes, they’re taken aback by the body’s made up appearance. Reclaiming the makeup process can be a cathartic first step, as an unexpected outlet for grief, and eventually acceptance of the death itself.
Ivette Jeffries-Logan and Omisade Burney-Scott are friends for life – and collaborators in death. Three years ago when a mutual friend realized she wouldn’t survive pancreatic cancer, the two central North Carolina women were within the circle of friends she summoned.
Over the course of about three months, the women stayed at Cynthia Brown’s side, as the community activist and one-time Durham City Council member went about the process of dying.
They rubbed her head, kept a watchful eye on her pain, and helped her decipher doctorspeak. And when her spirits appeared to lag, they’d tell her jokes and sing at her bedside.
This, Jeffries-Logan says, was a good death: “If I can help someone at the end of life heal and be clear, I will. There are some things we are required to do alone, but we are not isolated. We are community people. What happens to my nation happens to me. What happens to me happens to my nation.”
Jeffries-Logan and Burney-Scott are death doulas; their form of caregiving is both old and new. The ancient Greek word “doula,” meaning “woman servant” or “slave,” was repurposed in the 1960s to describe birth workers who offer encouragement, back rubs, and other assistance during childbirth.
These days, end-of-life doulas, sometimes called death midwives, are an emerging profession in the growing death positivity movement, which urges a paradigm shift for thinking and talking about death as natural and not inherently traumatic.
They provide nonmedical support to help ease the final transition for the terminally ill. But it’s not merely about that culminating moment, “The End.” They help the dying and their loved ones navigate death with all its “before and afters” – including sickness, acceptance, finding resources for all the legal housekeeping, funeral planning, and bereavement.
For Burney-Scott and Jeffries-Logan, it’s the highest calling.
Sisters in ritual, they performed sacraments of soothing and release drawn from their West African and Indigenous spiritual traditions. Burney-Scott is African American and was initiated in the West African Ife religious practice, and Jeffries-Logan is a member of the Occaneechi Band of the Saponi Nation, a tribe rooted in the North Carolina Piedmont region.
Being a death doula “is not fun. But it’s an honor,” says Burney-Scott, a healer and longtime advocate who most recently worked as a reproductive justice organizer in North Carolina.
She stumbled into the practice when her mother’s dear friend, a hospice nurse, showed Burney-Scott what to do at her mother’s passing.
“I didn’t want to do it,” she says. “The thing I feared most, from when I was a little girl and even when my mom was healthy, was losing my mother. She was that mom that all my friends would talk to, the mom who could let you know [you] were the most special person in the world even when she was yelling at you to do your laundry.”
Near the end, her mother made her retrieve a manila envelope containing her will, insurance information, deeds – the bureaucracy of death. But without ever using the word “doula,” her friend guided Burney-Scott in ushering out of this world the woman who had brought her into it.
“Aunt Cora” encouraged Burney-Scott to whisper her love in her mother’s ear, to hold her hand, play music, and to be present in “an organic practice.” One day, when her mother struggled to breathe, Cora assured Burney-Scott that she didn’t need to fetch doctors – that nothing was wrong.
“She’s leaving,” Cora told her, a simple statement that’s also a tenet of end-of-life care: Death can’t be controlled, but you can prepare for some aspects of it.
Because there is no universal or official training, no licensing and no regulation, there is no official estimate of how many death doulas operate in this country.
But death and dying are constant. And beyond the eulogies and coffins, there’s a clear and growing need for death-related services. The number of Medicare-approved home- and hospital-based hospices, for example, rose from barely 30 to slightly more than 3,400 between 1984 and 2009. A decade later, more than 4,500 exist, according to the Centers for Medicare & Medicaid Services.
Groups such as the International End-of-Life Doula Association and others train and certify doulas, providing hands-on experience, like a practicum. Still, many death doulas enter the field as Burney-Scott did, pressed into duty by a family member’s passing.
Few can make it into a full-time, paying job. Others have a background in the clergy or are people of faith, are volunteers involved in work with the sick and shut-in, or are shamans or healers.
Still others start end-of-life doulaing because they are nurses, midwives, or health care professionals who, through experience, have come to know that end of life is more than just what happens to your body.
Merilynne Rush, a nurse and home-birth midwife, co-founded Lifespan Doulas, an organization that trains and certifies end-of-life doulas. In three years, she says, the group has trained 200 people. She sees the need to educate and vet death doulas even while she thinks that community-trained doulas are valuable and necessary.
“There are so many people who are called in their communities [to do this] that no one should tell them they can’t,” Rush says. “I’d never be able to go into every community. That’s one reason for never having any kind of regulation that imposes a state-sanctioned structure that says you are in or out.
“At the same time, when you are working within a medical organization, they need to know you are OK and there are some standards,” she adds. “Training should never be mandatory, but optional.”
A diversity consultant who focuses on Native communities and trauma, Jeffries-Logan distrusts what she believes is a move toward professionalization.
Her death doula work is grounded in Indigenous customs, and communicating with the ancestors does not happen through curricula. Heeding a call from her ancestors, she did a traveling ceremony, designed to pave a deceased person’s road to the afterlife, for an infant relative who died before he turned a year old.
As part of a common tribal custom, she won’t speak the name of the deceased aloud for a year; to do so could keep the spirit tied to its temporal life – now a thing of the past – and distract it from the arduous journey to the ancestors.
Neither she nor Burney-Scott takes money for what they do. Rather, they extend their services to family and friends based on existing connections and an understanding that death is cultural and clinical. “It’s not like I was going to roll up and do this with just anyone. I don’t do shallow-ass relationships,” Jeffries-Logan says.
She questions what happens when the training moves out of informal community pedagogy and into a classroom.
“Who’s the certifying body? Who has the funds to pay for services?” she asks. She thinks of formalizing death doula work in the same vein as yoga, an Indian spiritual system that has been co-opted from communities of color and networks of caring to be dominated by White instructors who teach a fraction – the poses, the breathing – of the whole for pay.
Both women know that communities of color lag in accessing end-of-life care – whether due to cultural beliefs, experience and well-founded fear of racism in medical settings, lack of insurance or financial resources, or misconceptions about what’s available.
For example, Black people represented 8% of those receiving Medicare-funded hospice benefits in 2017, compared to 82% for White people.
In many Southern Black communities, people won’t talk about death, Burney-Scott offers. “There is truth in our mouth. You can manifest things with your word. Don’t talk about death [lest] you invite it in.”
That goes for other communities, as well. A 2010 study comparing Latino immigrant to White cancer caregivers found that the Latinos were surprised and even disturbed by transparent talk about death in hospice pamphlets and consultations.
Furthermore, Rush says that generally when death is imminent, “most people are overwhelmed and don’t know where to turn. They don’t even know that they can get hospice earlier. And even then, they may have a nurse come in for a few hours or an aide, but they aren’t there all the time. People have to rely on their community and network.”
And that’s just what Cynthia Brown did once she accepted that she wasn’t going to beat cancer, calling on the women her family members sometimes referred to as “Cynthia’s girls.”
“She invited us into the process from the very beginning. We swung into action on the logistical things: running errands, taking her to appointments, making meals,” Burney-Scott says.
“And then she said, ‘I want to cut my hair.’ She had 12 braids left. Each one of us cut two braids. Then, she called and said, ‘Hey, will you come over and help me write my memorial?”
She summoned Jeffries-Logan and another friend to help her assemble and bless her ancestors’ altar. With trademark precision and humor, she even planned who would cook at her funeral repast or meal: not her many loving White friends; she didn’t trust their chops in the kitchen.
Her death doulas and friends, in turn, called on each other, their own histories of loss, and their ancestors to help guide Brown through her own departure.
And when the end came, the friends all rolled to the hospital one last time. Burney-Scott donned her trademark white head wrap and packed a bag with crystals and Florida water, a citrusy blend believed to have calming properties.
Jeffries-Logan carried tobacco as an offering; red cedar to represent blood and life force; water from the Eno River, which courses through her tribal nation’s territory; and a ceremonial turtle rattle, used by tribes in special ceremonies.
“Cynthia fed me, I laid up on her couch, we carpooled to anti-racism trainings around the state,” Jeffries-Logan says, her eyes moist and a catch in her voice. “And when we did a ritual for my mother [who died from Alzheimer’s disease] in the ocean, Cynthia told me, since she had lost her parents at a young age and had to be like a mother to her younger siblings, she knew what it was like to be a motherless child. I was going to do whatever I could for her.”
She didn’t want her beloved sister-friend “scratching and clawing to stay here.” So she stroked the soles of Brown’s feet – which got cooler and cooler as death approached – not to bring back sensation, but to help untether her from this earth.
When Brown took her last breath, Burney-Scott’s and Jeffries-Logan’s hands were among those resting on her body. It was a fitting end: a social death for a community advocate who told her friends, “You continue to fight the good fight, and you have to promise me that you won’t leave anyone behind.”
When Carla Sofka’s mother died just before Thanksgiving 2017, Sofka didn’t immediately post the news on social media. She was busy planning the funeral, making travel arrangements and getting an obituary ready for the weekly newspaper in her mother’s community.
“We had 23 hours to get the information to them if we didn’t want it to be 10 days before Mom’s obituary was in the local paper,” said Sofka, a professor of social work at Siena College in Loudonville, New York.
Then the phone rang.
Unbeknownst to Sofka, the funeral home had posted the obituary on its website, and almost immediately a childhood friend had spotted it and shared it on Sofka’s Facebook page.
“The minute that obituary showed up on my feed, people who saw it started posting comments and messages to me,” she said. “I didn’t even know this was going on, because I didn’t know it was there.”
What makes Sofka’s story ironic is that she has been writing and teaching about the impact of technology on grief and dying for decades. She even coined the term “thanatechnology” (“thana-” means death in Greek) in 1997. But in her moment of grief, she never thought to say to the funeral director, “Please don’t post Mom’s obituary on your website until we tell you that we’ve notified the people who need to find out another way.” (By the way, that funeral home now asks families whether posting is okay.)
Lee Poskanzer, CEO of Directive Communication Systems, which helps clients safeguard digital assets in their estates, experienced a more pleasant Facebook surprise in 2010 when he posted news of his mother’s death on Facebook.
“A very close friend of mine, who I would never have thought about calling, actually hopped on a plane and was able to make my mom’s funeral the next day,” he said.
The Social Media Rules Have Changed
As Poskanzer and Sofka’s stories illustrate, digital technologies have changed the rules surrounding grief and dying.
“How does one decipher a uniform approach when our society is using technology in so many diverse ways and each one of us has a different approach to our online presence and our digital footprint?” Poskanzer asked.
Fortunately, experts like Poskanzer and Sofka have begun answering those questions. While the landscape is still shifting, it’s possible to discern some basic rules of “netiquette.”
Here are eight tips about death and social media:
1. Leave the scoops to CNN and Fox News. If you’ve heard about a death but haven’t seen a Facebook post from the next of kin, that could be because family members are still trying to contact people who need to hear the news firsthand. Sofka said a good question to ask yourself is, “Is it your story to tell?”
2. Think before you post. Even when it’s appropriate to share, make sure what you’re sharing is appropriate. Don’t post painful or disturbing information without the family’s consent — and even then consider whether sharing is appropriate. “We may not recognize that we could be harming someone by posting or tweeting or putting a picture on Instagram,” Poskanzer said.
3. Avoid being cryptic. Nuance vanishes in cyberspace. A post that said “I’m praying for the Johnson family at this difficult time” could refer to anything from a death to a job loss to a house fire. “You have to know the poster in order to understand a little bit where they’re coming from,” Poskanzer said. When in doubt, pick up the phone.
4. Remember that news travels fast. When Sofka’s aunt died unexpectedly, she elected not to tell her teenage daughter, who was on vacation in Florida and didn’t know her great aunt well. Unfortunately, cousins began posting stories about the deceased woman on Facebook, so Sofka’s daughter quickly found out and wanted to know what was happening. “I can’t believe I didn’t expect that,” Sofka said.
5. Be patient. “Sometimes people watch how many people like a post or how quickly they acknowledge it,” Sofka said. “Somebody who’s grieving doesn’t have the time or energy to focus on that.” And if you’re on the other side of the situation, consider posting something like Sofka did after her mother’s passing: “I’m overwhelmed by the caring and the kindness of the postings. Please forgive me if I don’t have time to respond right now.”
6. Watch out for problems. Unfortunately, online death notices can attract everything from negative comments to fraudulent GoFundMe campaigns allegedly set up to pay for funeral expenses. “As family members and friends, if we see that, we need to contact the family immediately so somebody can contact GoFundMe,” Poskanzer said.
7. Be helpful — but not too helpful. It’s fine to offer to monitor the family’s online presence for problems, but don’t go too far. Poskanzer recalls a woman whose husband had just passed away. “While she was sitting shiva (mourning in the Jewish tradition), somebody had memorialized the page to her husband’s Facebook,” he said. As a result, the grieving woman no longer had access to the page. Facebook also has information about legacy contacts; people chosen in advance to oversee memorialized accounts.
8. Adjust your response to the situation. Poskanzer lost a friend recently who was very active on social media — to the point of chronicling her cancer battle online — so sending online condolences after she died made sense. On the other hand, Sofka talked with a woman who’s not active on social media and had recently lost her father. “She said, ‘Nobody sent cards; that was the hardest thing for me, because if felt like nobody cared,’” Sofka recalls.
As the rules of netiquette change — funeral selfies, anyone? — perhaps the best rule to follow is the Golden Rule: Blog, post and tweet about others as you would have them blog, post and tweet about you.
“To die will be an awfully big adventure.” Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.
But things were different in 1902 when Peter Pan first appeared in the book “The Little White Bird.” We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.
Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.
But people like Lauren Carroll are trying to change all of that. Carroll and her partner, Erin Merelli, formed Deathwives in hopes of forging a cultural shift which encourages people to think and talk more freely about death. They describe Deathwives as “a collective of professionals who care about the practice of good death.” And they want to educate others about their end of life options which they say should include in-home funerals and death doulas.
“You have the right to a good death,” Carroll said. “We seek to widen the narrative around death and dying and support our community as we remember how to care for one another till the very end.”
A former funeral director and current hospice volunteer, Carroll serves on the board of directors for the National Home Funeral Alliance (NHFA). She said she wants to create connections between funeral homes, home funeral educators, death doulas and families. Merelli is a death doula, ceremonialist, funeral officiant and grief counselor. She is often called to sit with people as they die and to “create ritual and sacred space around the dying process.”
Most people don’t know that home funerals are an option available to them, Carroll said. “There have never been laws against this. You have the freedom to die at home and to take care of your loved ones at home. The family legally owns the body even after death in a hospital. The only law is that you have 24 hours after death to refrigerate or cremate the remains.”
According to the NHFA, “keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials and private events are not under the jurisdiction of the state or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.” The National Home Funeral Alliance offers a list of legal requirements on the books in each state—either statutes that are applicable to all or regulations that fall under the state mortuary board’s set of procedures applicable for licensed funeral directors only.
“Keep this in mind: there are no funeral police,” the alliance states. “And there are exceptions to every rule, many of which happen when someone dies in the middle of an ice storm or a weekend or a holiday or a multitude of other unpredictable circumstances. Even under perfect conditions or professional care, many of these requirements are not logistically or practically enforceable.”
When America was a new nation, families cared for their dead in their own homes. The preparation, dressing and readying for a funeral was done there, and the caskets were typically built by the family themselves. As parlors gained popularity, families held their funerals in them. Traditionally rooms filled with a family’s finest possessions, parlors were ideal locations for honoring the dead. The parlors of grander homes even had a “death door” for the removal of the deceased family member, as it was considered improper to remove a body through a door the living entered.
The Civil War brought about the practice of embalming, as so many men were dying far from home, and the practice allowed the time needed to bring the bodies home to their families. With embalming came the appearance of funeral homes, funeral directors, morticians and undertakers all over the United States. The National Funeral Directors Association (NFDA) as well as the first school of mortuary science—the Cincinnati School of Embalming, now known as the Cincinnati College of Mortuary Science—were both formed in 1882. It was really the beginning of the same funeral process we use today, though advances in the profession have improved the ways that morticians care for the body as well as the ways that families can remember their dead.
And new trends on how to honor the dead and even just how we talk about death are being presented all the time. Environmentally-friendly funerals are being offered by so-called “green” funeral homes. Advocates of these services say that it’s less expensive, uses less natural resources and eliminates the use of hazardous chemicals such as formaldehyde.
And apparently we’re using a lot. According to an article by Tech Insider, more than 800,000 gallons of formaldehyde are put into the ground along with dead bodies every year in the US. In addition, conventional burials in the US every year use 30 million board feet of hardwoods, 2,700 tons of copper and bronze, 104,272 tons of steel, and 1,636,000 tons of reinforced concrete, Tech insider reported. “The amount of casket wood alone is equivalent to about 4 million acres of forest and could build about 4.5 million homes.”
According to the NFDA, a green funeral may include no embalming or embalming with formaldehyde-free products; the use of sustainable biodegradable clothing, shroud or casket; the use of recycled paper products; serving organic food; locally-grown organic flowers; funeral guest carpooling; and natural or green burial.
“In a purist natural or green burial, the body is buried, without embalming, in a natural setting,” the NFDA states. Any shroud or casket that is used must be biodegradable, nontoxic and of sustainable material. Traditional standing headstones are not permitted. Instead, flat rocks, plants or trees may serve as grave markers. Some cemeteries use GPS to mark the locations of gravesites. A natural or green burial may also simply mean burial without embalming, in a biodegradable casket without a vault, when permitted by a cemetery.”
Jon Hallford, also a member of the Deathwives Collective, owns Return to Nature Burial and Cremation in Colorado Springs, Colorado. Hallford told 9NEWS.com in Denver, Colorado last month that he plans to begin offering aquamation as an alternative to cremation. “Aquamation uses an alkaline hydrolysis system that consists of a metal chamber that uses water and lye for the cremation process, which is a cleaner process than the traditional cremation,” 9NEWS reported. “Once he has the system in place, he’ll be the only funeral home in Colorado to offer the service.”
The environment isn’t the only reason we’re talking more about death. Death doulas are becoming more mainstream. Just as a doula or birth companion provides guidance and support to a pregnant woman before, during or after the first days of the life of her baby, the death or end of life doula accompanies the dying person and their loved ones through the final months, weeks and days of their life. The doula provides support, resources, education and friendship for this period of life, whether it lasts a year or a day.
Then there are now so-called “Death Cafes,” where people gather to share cake and coffee, tea or hot chocolate and talk about death. A “Death Café is a space where you talk about death to become more engaged with life. Such is the paradox of a Death Café,” writes Abby Buckley about a meeting at the Alchemy Café in Gawler, South Australia. “We came from all walks of life, aged 6 months to 64 years old, from all over South Australia but met as equals because we all have one thing in common. We know we are going to die. We don’t have many spaces in our lives or our culture that are conducive to talking about death and dying. But people are hungry to talk about their experiences, to listen to others and to reflect on death.”
Death Cafés typically offer visitors an opportunity to discuss death without judgment, without prescribed ideology, and without any sales pitches. They are not grief counseling or bereavement sessions. There are no agendas, objectives or themes, rather they are often philosophical—and at times, humorous—discussions about death.
Death Café is both the name of the organization that created the format of the death-discussion groups and the term for the meetings themselves. To date, some 9,045 Death Cafes have taken place in 65 countries—4669 of them in the United States—since September 2011.
Death Café calls Death Café a “social franchise,” meaning that people who sign up to the organization’s guide and principles can use the name Death Café, post events to the website deathcafe.com and talk to the press as an affiliate of Death Café.
The Death Café model was developed by the late Jon Underwood and his mother, Sue Barsky Reid, based on the ideas of Swiss sociologist and ethnologist, Bernard Crettaz.
It’s not surprising the concept of Death Cafes has taken off. There’s been a tendency in the last few years to bring death out from among the list of forbidden topics.
“We have become such an isolated nation,” Carroll said. “Death is normal, and for some reason we’ve made it seem like the most abnormal, scary thing. We don’t even talk about it. Like Jon Underwood said, ‘Just like talking about sex won’t make you pregnant, talking about death won’t make you dead.’”
Carroll said society has removed the family from taking an active part in the death process “other than picking out the casket and flowers. In the past we had to prepare and think about it. It helps the healing process to be more hands-on, and it has been proven across the board that it helps to be active in grief.”
With Deathwives, Carroll hopes to teach others to have a better “relationship” with death, to take away the fear. “I have a healthy relationship with death. Knowing I’ll die, and talking about it, has made my life fuller. That’s how everyone single person should live.”
Carroll compared the moment of death to the moment of being born. “We don’t know what happens after death, just as a baby comes into the world having no idea what’s about to happen. We’ve all done it before. We were all born. We opened our eyes to the unknown. I have a feeling what’s next is going to be pretty amazing. If you think about it, no person who has had a near-death experience has ever come back and said that it was awful.”
Judy Chicago is well-aware she’s going to die one day — and she’s coming to terms with it. In her newest body of work, the 80-year-old feminist artist reckons with her own mortality, as well as the untimely death she fears for the planet’s threatened species and ecosystems.
“The End: A Meditation on Death and Extinction,” at the National Museum of Women in the Arts, consists of nearly 40 works of painted porcelain and glass, plus two large sculptures. It’s divided into three sequential sections: “Stages of Dying,” “Mortality” and “Extinction.” Chicago’s new series is “luminous,” according to exhibition curator Virginia Treanor. “I think it’s going to be a really contemplative experience. People will be moved by it, for sure.”
Here’s a closer look at five of the pieces on display.
Stages of Dying 5/6: Depression
An aged, bald woman cradles her face in her hands in this white porcelain piece, which is part of the “Stages of Dying” section of the exhibition. The figure personifies one of the five stages of grief: denial, anger, bargaining, depression and acceptance. These stages can apply both to those who are grieving the loss of someone and to those grappling with their own end. The older woman Chicago depicts is intended to represent an Everywoman, as well as the indiscriminate inevitability of death. “For so much of human history, the male figure has been the archetype of humanity,” says Treanor. “We say, ‘mankind.’ She wanted to shift that paradigm and make an Everywoman rather than an Everyman.”
A woman’s eyes are closed, her head resting on a pillow, hands clasped around a bouquet of lilies. The bronze sculpture is a self-portrait of the artist, who in the “Mortality” section of the show imagines different scenarios in which she might die. “Mortality Relief” pays homage to traditional death masks, which were used from the Middle Ages until the 19th century — before the advent of photography — to preserve someone’s likeness after death. Treanor describes the sculpture as “peaceful and serene.”
In the Shadow of Death
Thirty of the pieces in “The End” — including this one from the “Mortality” section — are kiln-fired paintings on black glass: a laborious process that requires multiple firings. Each time something’s put into the kiln, there’s a risk that it’s going to break, which means that the artist needs to be exacting. “In the Shadow of Death” is engraved with a quote from philosopher Todd May, reading, in part: “To forge our lives under the haunting shadow of death is both our reality and our opportunity,” with an emphasis on the word “opportunity.” It’s Chicago’s way of noting that there’s no need to fear death. “We have this opportunity in life because we know it’s finite,” Treanor says. “It’s going to end at some point.”
How Will I Die? #2
A woman, once again a self-portrait of Chicago, is curled into the fetal position, text wrapped around her body — “Will I leave as I arrived?” — in this kiln-fired painting on black glass. “Linking the experience of birth and death is powerful in a visual way, but also in an existential way,” Treanor says. She particularly lauds Chicago’s use of a wrinkled, aged figure. “This is classic Judy Chicago, and it’s one of the reasons I love her and her work so much,” she says. “She’s constantly pushing the boundaries. Nude women in art are a dime a dozen, right? But very rarely do we see an older nude woman. Very rarely do we see older women at all.”
In “Extinction,” the final section of the exhibit, Chicago turns from pondering individual death to the obliteration of entire ecosystems and species. A gaunt polar bear clings to a melting iceberg in the black-glass painting “Stranded.” Other works depict elephants killed for their tusks and trees flayed of their bark. Capturing that kind of destruction requires extensive research, which Chicago has described as an emotionally draining experience. “It was interesting to hear her speak about these works, and equating the physical exertion that went into them — like multiple [kiln] firings — with the emotional toll it took on her,” Treanor says. “She said it was really gut-wrenching.”
If you go/
Judy Chicago — The End: A Meditation on Death and Extinction
National Museum of Women in the Arts, 1250 New York Ave. NW. nmwa.org .
Dates: Through Jan. 20.
Admission: $10; $8 for seniors and students; free for members and visitors 18 and under.
We are running out of space to bury people, and cremation has an enormous carbon footprint. So people are finding new ways to dispose of the bodies of their loved ones.
Matt Baskerville has served as a licensed funeral director in Illinois for the past 24 years. In that time, he’s seen his industry—and what people want after their deaths—change dramatically.
For instance, when Baskerville entered the business in the mid-’90s, the cremation rate was roughly 10%. Now, when he looks at the records of recent years at his own businesses (he directs at four funeral homes in towns of 10,000 people or less), he sees that more than 40% of people are opting for cremation.
According to new findings from the National Funeral Directors Association, for which Baskerville serves as a spokesperson, the national cremation rate is projected to be around 54% (“The Midwest tends to be a bit more traditional,” he says). Burial, once the far-dominant option for end-of-life services, has dropped to just around 41%, and Baskerville expects it will continue to decline in popularity.
Many factors are driving this shift. For one, Baskerville says, “we’re a much more mobile society.” When families tended to live and die in the same place for generations, burial was a way to keep everyone together. But now, he’s seeing that in his hometown of Wilmington, Illinois, the younger generation is dispersing, and the ties to location are not as strong. Services like cremation better meet the needs of families who are spread out geographically. It’s becoming so much more commonplace that a new set of startups now exist to cater to families whose loved ones opt for cremation. One Portland-based company called Solace, for instance, operates as a direct-to-consumer cremation service that manages the transport, storage, cremation, and return of the remains for a flat fee.
There’s also a growing awareness that traditional burial is incompatible with the state of the planet. We are, quite simply, running out of space to devote plots of land to people who are no longer living. In cities, space for necessities like housing and parks is already in short supply, and many cities like Berlin are beginning to convert old cemeteries to other land uses. But even in places where space is not so crunched, like Baskerville’s hometown, there’s a growing recognition that the burial process—from the chemicals used to embalm a body to the wood used to create caskets—is environmentally damaging, and people are beginning to seek out alternatives.
“People like the concept of going green,” Baskerville says. But even traditional flame cremation does not exactly meet that need. Cremating a single body emits as much carbon as an 1,000-mile car trip.
So increasingly, people are seeking out greener alternatives for their afterlife. A process called alkaline hydrolysis is now legal in 15 states, including Baskerville’s home of Illinois. He describes it as “flameless cremation” because what it entails is using the gentle flow of warm water mixed with alkali (usually sodium hydroxide or potassium hydroxide) to naturally liquefy a body over the course of several hours. The process creates relatively little emissions and leaves behind no waste. The leftover liquid can be disposed down the drain, and the remaining bones and metal can then go in an urn, like a traditional cremation. In Baskerville’s businesses, around 40% of people who chose cremation are opting for the flameless process.
Another emerging alternative is human composting, which was legalized in Washington (the first state to do so) in spring 2019. Through exposure to microbes, bodies can be naturally broken down and turned into soil—around one cubic yard per person, to be precise. A Seattle-based company called Recompose is pioneering the service, which will be available as an option to Washington residents beginning May 2020. Katrina Spade, Recompose’s founder and CEO, previously founded the Urban Death Project to advocate for the practice as both more sustainable and more practical in terms of land use. Recompose has proposed memorial sites where family members could come visit the bodies as they were decomposing. The dirt could then be given to families to save or to use to grow trees or plants. The company plans to open its first site in 2020.
While body composting is limited to Washington for the time being, Baskerville would not be surprised if it became more widespread. “Trends in burials tend to begin on the west coast and spread from there,” he says. Cremation, for instance, first overtook burials in popularity on the west coast, and interest in greener options, he believes, will continue to grow.
Moving away from traditional burials also tracks with a shift in American attitudes toward death on the whole. The rising “death wellness” movement encourages a more open and accepting approach to death and mortality, whether that be through dinner parties built around the discussion of death, or through hiring “death doulas” to coach people as they approach the end of life. HBO recently released a documentary called Alternate Endings that explores the different ways in which people in the U.S. are opting to memorialize themselves. Certainly, the availability of a wider range of funeral options necessitates a more open conversation around end-of-life planning and what death and burial means to individuals. To Baskerville, this is a good thing. “In years past in the American culture, death has been a topic that was not talked about,” he says. Now, though, “end of life is more of an open topic of conversation in most families now.”