A transplant to Los Angeles since 1988, Joseph Leahy was familiar with mortality. His family was in the funerary business. His family often took him to the cemetery as a child. “I’ve spent a lot of time around death and dying,” Leahy said. It was only when he moved out West, however, that he discovered the traditions of Día de los Muertos and identified with it. His enthusiasm for the celebration was so much so that his altars were often lauded in the early years of the Hollywood Forever Cemetery’s annual celebrations. Today, he continues to honor its sanctity with a yearly ritual commemorating his loved ones through a personal altar made at home and with the help of his daughter. His appreciation for the sacred tradition has also influenced his work in the HIV positive/AIDS communities. Apart from his yearly personal altar, Leahy has also helped these communities celebrate the ones they’ve loved and lost through meaningful remembrance.
More than 500 years ago, when the Spanish Conquistadors landed in what is now Mexico, they encountered natives practicing a ritual that seemed to mock death.
It was a ritual the indigenous people had been practicing at least 3,000 years. A ritual the Spaniards would try unsuccessfully to eradicate.
A ritual known today as Dia de los Muertos, or Day of the Dead.
The ritual is celebrated in Mexico and certain parts of the United States. Although the ritual has since been merged with Catholic theology, it still maintains the basic principles of the Aztec ritual, such as the use of skulls.
Today, people don wooden skull masks called calacas and dance in honor of their deceased relatives. The wooden skulls are also placed on altars that are dedicated to the dead. Sugar skulls, made with the names of the dead person on the forehead, are eaten by a relative or friend, according to Mary J. Adrade, who has written three books on the ritual.
The Aztecs and other Meso-American civilizations kept skulls as trophies and displayed them during the ritual. The skulls were used to symbolize death and rebirth.
The skulls were used to honor the dead, whom the Aztecs and other Meso-American civilizations believed came back to visit during the monthlong ritual.
Unlike the Spaniards, who viewed death as the end of life, the natives viewed it as the continuation of life. Instead of fearing death, they embraced it. To them, life was a dream and only in death did they become truly awake.
“The pre-Hispanic people honored duality as being dynamic,” said Christina Gonzalez, senior lecturer on Hispanic issues at Arizona State University. “They didn’t separate death from pain, wealth from poverty like they did in Western cultures.”
However, the Spaniards considered the ritual to be sacrilegious. They perceived the indigenous people to be barbaric and pagan.
In their attempts to convert them to Catholicism, the Spaniards tried to kill the ritual.
But like the old Aztec spirits, the ritual refused to die.
To make the ritual more Christian, the Spaniards moved it so it coincided with All Saints’ Day and All Souls’ Day (Nov. 1 and 2), which is when it is celebrated today.
Previously it fell on the ninth month of the Aztec Solar Calendar, approximately the beginning of August, and was celebrated for the entire month. Festivities were presided over by the goddess Mictecacihuatl. The goddess, known as “Lady of the Dead,” was believed to have died at birth, Andrade said.
Today, Day of the Dead is celebrated in Mexico and in certain parts of the United States and Central America.
“It’s celebrated different depending on where you go,” Gonzalez said.
In rural Mexico, people visit the cemetery where their loved ones are buried. They decorate gravesites with marigold flowers and candles. They bring toys for dead children and bottles of tequila to adults. They sit on picnic blankets next to gravesites and eat the favorite food of their loved ones.
In Guadalupe, the ritual is celebrated much like it is in rural Mexico.
“Here the people spend the day in the cemetery,” said Esther Cota, the parish secretary at the Our Lady of Guadalupe Church. “The graves are decorated real pretty by the people.”
Often, the worst kind of dinner party is one with a bunch of strangers: It’s hard to break the ice, and if small talk dies, you might end up sitting in stony silence. But the dinner I spent Sunday at Ballard’s Brimmer & Heeltap came preloaded with excited chatter.
This was all the more surprising given the preordained topic: Death. And before I’d even picked up my fork, one purple-haired seatmate, Elly, was already telling us from across the dinner table about the passing of her grandma.
Elly said her grandmother’s death was about as clean as they come. Her grandmother was comfortable talking about it with Elly, she had distributed her belongings long before it happened, and her family was close by at the time of her passing. She even had a “death doula” to assist her during the process. Grandma planned it all out.
“That’s a good death,” Amanda, another participant, said enthusiastically at the end of Elly’s story. Everyone else at the table nodded in agreement. About 40 of us had gathered for Death Over Dinner, a Seattle-based nonprofit dedicated to reversing the pain and suffering associated with mortality.
Dying well means different things to different people. Maybe it’s dying for a good cause, or just dying when you’re still cognizant of your surroundings. But planning my funeral now, at age 23, is something I’d never considered — until I heard about death positivity.
Death positivity is a movement to get people comfortable talking about their eventual demise. Washington is a uniquely good place for it. You can go to one of Washington’s numerous death conventions or parties, such as one hosted by the People’s Memorial Association (PMA) in December. Many of its biggest supporters, like PMA’s Executive Director Nora Menkin or Katrina Spade, founder of Recompose, make their home here. And most death-positive advocates know the statistic that although 80% of people want to die at home, only 20% actually do, so they say these conversations are a good way to learn the last wishes of the people you love and to express your own wishes before it’s too late.
For the environmentally inclined, Washington has long been on the cutting edge of what a green death could look like; death positivity is often linked with green options, which offer even more choices for people to consider when planning their deaths. This includes green funerals — basically, environmentally conscious funerals that can include everything from recomposition to water cremation to green burials (also known as natural burials), which allow the body to naturally decompose without preservatives. And a cemetery in Bellingham, Moles Farewell Tributes, became the first certified natural burial ground in an existing cemetery in the nation and the 12th cemetery certified overall by the Green Burials Council in January 2009.
In addition, “recomposition” (frequently called “human composting”) was legalized this year along with water cremation, adding to the list of environmentally conscious ways you can dispose of your body post-mortem. Water cremation, also known as alkaline hydrolysis, is basically cremation with hot, chemical-filled water instead of fire inside a pressurized vessel. (Water cremation of pets has been legal for much longer.)
Advocates say that the death positivity movement, combined with the legalization of more options, has moved forward conversations about it further than ever before.
“Death is having its moment right now, in a lot of ways,” says Brian Flowers, green burial coordinator at Moles Farewell Tributes. “So that education is happening at a pretty rapid pace.”
Michael Hebb, the founder of Death Over Dinner, is one of those advocates in Washington persuading people to talk with their loved ones about their mortality. While most of Hebb’s dinners happen independently among families (you can download a template to host your own from his website), the dinner I attended was one of the first around Seattle where participants had a chance to delve into death with strangers. For me, those strangers were Amanda and Elly, who are longtime friends, on my left, and a quieter, elderly couple, Sheryl and Bill, on my right. Each person was fairly comfortable talking about their deaths; Sheryl told the table that her last meal would involve potatoes, and Bill matter-of-factly said all he would want was a mango.
Hebb took a moment at the beginning of the dinner to walk participants, seated all around the restaurant, through the night’s proceedings: On each table was an envelope with five short questions about death, ranging from playful to serious. “What would you choose as your last meal?” “What are your wishes for your body after you die?”
But before we could answer, he brought our attention to the candles by our dinner plates.
“The first thing that happens at the table is we all take a moment and think about someone who has died, who had a powerful impact on our lives,” Hebb told us. “Really the first person that comes to mind.” Then, each participant was asked to give that person a short eulogy to their table before lighting the candle.
I knew mine in seconds. Hebb told us to hold on to that person, even if it made us uncomfortable. Vulnerability, he said, was key to making this work. So I held on.
Participants engage in conversation during a Death Over Dinner event at Brimmer & Heeltap in Ballard on Oct. 27, 2019. The dinner series, started by Michael Hebb in 2013, is meant to facilitate and normalize open conversations about death in a positive way.
* * *
Most people I talk to know what they want their funeral to look like. Some friends told me they wanted something cheap and easy. Others were quite specific: One roommate told me she wants her cremated ashes exploded in fireworks; another said she’d like her body detoxified and eaten up by mushrooms (she told me this while cooking mushroom risotto). An ex used to tell me he’d like his body shot out of a cannon. When I sent my sister the question over text, she replied seconds later: “Make me a tree for sure.”
My parents also had a response at the ready and told me they’d want a quick burial, no fancy stuff, the day after they die. In Guatemala, most funerals happen that way; there’s no weeklong preparation. When my Abuelito Quique passed away in Guatemala City, my dad flew out from the Seattle-Tacoma International Airport the night it happened and arrived just in time for the funeral services the following morning. Abuelito Quique’s funeral might qualify as “green” in the U.S. — or at least greener, since there’s no need to preserve the body through embalming or other chemicals.
Most Americans these days don’t pine for a cushioned casket in which to put their immaculately preserved corpse. In Washington, almost 80% choose cremation; the national average sits at about 50%, according to a 2017 study. Curiosity about greener funerals is on the rise, too. Adults over 40 interested in green funerals jumped nationally from 43% in 2010 to 64% in 2015, according to a Funeral and Memorial Information Council study.
“In the time that I’ve been doing this, it’s accelerated tremendously,” says Lucinda Herring, a green burial consultant and author of Reimagining Death. “I think that’s only going to grow, particularly with baby boomers who are taking care of their parents and themselves.”
But a greener death doesn’t mean an easier one. There are plenty of hoops to jump through before getting a body in the ground — especially for greener burials. Part of it is the lack of options. In Washington, only a handful of cemeteries allow green burials, some of which are certified by the Green Burial Council. Preplanning is often necessary in order to ensure that the deceased can even be taken to a green burial site.
“[Plots are] hard to get to so, numberwise, there’s probably enough to meet the demand right now, but they’re spread out geographically in a way that’s challenging for families,” Flowers says. At his location, he’s helped service families from cities as distant as Olympia or Boise, Idaho.
Until Herring helped perform her first green burial in the ’90s, she and her friends didn’t know that such a thing existed. A friend dying of breast cancer told her and others that she didn’t want her remains to go to a funeral director. She wanted a funeral at home. It was only after some research that Herring discovered it was possible and legal to care for the body immediately after death at home.
Still, Herring says the increase in public interest has made educating others a little easier. She also emphasizes the need to plan ahead.
“If you’re looking for a green burial plot, you should very much talk to cemeteries and ask if they provide green burial,” she says. “Because doing it at need if someone dies quickly is difficult.”
Some of those barriers to green burials are coming down. With the legalization of water cremation for humans this year, Washington bodies no longer have to be shipped to other states (typically Oregon) for the process. Flowers says Moles Farewell Tributes was one of only a dozen green burial sites when it opened its green cemetery in 2009.
“We’ve definitely seen a shift,” Flowers says. “Now, there’s over 300.”
Flowers and others say lack of information is the biggest barrier keeping green death options out of the mainstream. Spade, the founder of Recompose, says that when people are taken aback by the idea of composting their remains, she usually let’s let them mull over other options before pressing further.
“If you really think of the traditional method, [and] you think of embalming, you’d think, ‘Oh, that’s intense also,’ ” she says, “So honestly, I usually just let it lie. I think people need their own time to come around to it.”
After telling her about the dinner, I asked what I should do if I ran into a person like that myself. She laughed a little. That shouldn’t be an issue, she says: “If you’re attending Death Over Dinner, you’re perhaps more comfortable than the average person.”
* * *
We began to light our candles at the dinner table, and when it was my turn, I returned to third grade. Anisha was one of my best friends, a small Muslim girl with chubby cheeks who shared my adolescent love of the Disney Channel show Kim Possible, whose brother we tormented by hiding his Pokemon cards under her bed, who I would talk to for hours on the carpeted floor of her bedroom, and who passed away from heart failure one night a couple years into our friendship.
My parents told me in our driveway, next to our minivan on a slightly humid, overcast afternoon. We talked about what it meant, and about God. The rest came in pieces: the news of her funeral, which happened quickly and privately, and then the realization that I would never see her again. When I visited her parents’ house the week of her death, Anisha’s mother told mine that she’d looked like she was only sleeping. There were cookies on the table that I didn’t eat. I remember wanting one but passing because everything felt so strange that it didn’t make sense to enjoy chocolate chips.
I’ve told myself this story many times. Retelling it now feels like reciting a mantra, one that’s simplified in its repetition, but has become as much a part of my life as my name or the soft scar on my knee. When I encountered my next death, I can’t say I was ready, exactly, but I knew who to talk to about it.
Finding comfort in talking about death takes practice. Hebb told me that he hadn’t always had that himself. Conversations about death in his family were nonexistent. Hebb’s dad was over 70 when he was born, making it likely he would pass before Hebb graduated from college, or even high school. He realizes that logic now but says he didn’t think much about it when he was a kid. When his father died, Hebb was 13, and his family didn’t know how to talk about it.
“It really devastated our family,” he says. “The majority of the time we’re faced with this conversation, it’s when something has gone horribly wrong or when it’s about to.”
Hebb says his father didn’t get to explain what he wanted from his death, and his family was left with a pain they didn’t know how to process. Just knowing how to talk could have made the situation much different.
The five other guests at my table expressed varying degrees of comfort with talking about the deaths of those close to them. I’d never told the story of Anisha to a group of strangers, and the words felt odd coming out of my mouth (it didn’t help that this happened before we got appetizers). But there was also peace in the process. Everyone listened. I listened in return. And by dessert, we were already planning what we wanted our funerals to look like in detail. I’ve always wanted a burial I can call “green,” whether that means turning my body into mulch or something else. But I also realized I was willing to bend if a cheaper but still-green option was easier.
At the end of the dinner, just before everyone got up to leave, the restaurant’s owner tapped a glass to get our attention. There were two birthdays to celebrate, she told us. A chocolate cake was carried out from the kitchen and everyone began to sing “Happy Birthday.”
Ending a dinner about death with a birthday might make sense to a death-positive person: Most advocates will tell you that life and death aren’t so far apart. Spade put it simply, saying she believes “that humans are part of nature, even if they’re destroying it.”
We go back to where we came from. All bodies decompose. Green burials — and the acceptance that comes with them — simply reinforce that whatever is left of us eventually gives life to something else. If that’s what I choose, I’ll be giving life long after my dying breath.
At a death cafe inside Bigelow Chapel at Mount Auburn Cemetery, people gather to enjoy cake and tea while discussing death and mortality in a safe space.
By Olivia Deng
Before dying or almost dying, the conventional anecdote is that people see a flashback or a white light and have an out-of-body experience. But Barbara Olson, a retired social worker, saw darkness and Darth Vader as she started accepting her end. She had fallen out of a raft 20 years ago in Maine. “I kept having all these ‘Star Wars’ images of Darth Vader… Our guy on the raft [had] a ‘Star Wars’ name so that’s why I started thinking Darth Vader,” Olson said. “The other thing I kept thinking about is, I was with a man that I didn’t know that well … I was worried about my father and what he might think.”
These conversations arise at a death cafe, a gathering where people enjoy cake and tea while discussing death and mortality in a safe space. Death cafes can be held anywhere — a home, a coffee shop, and in this case, a cemetery. Inside the regal gothic revival-style Bigelow Chapel located on top of a hill at Mount Auburn Cemetery, a diverse gathering of strangers treated themselves to cupcakes and tea before settling down in chairs arranged in circles. Boxes of tissues lined the walls, should anyone need one.
Death cafes are modeled after 19th-century salons where people convened for intellectual discussions. Bernard Crettaz, a Swiss sociologist, introduced the idea of death cafes in 2004 and Jon Underwood popularized them, hosting the first death cafe in his London home. Soon enough, death cafes were embraced across the world.
Death, famously called the “great equalizer” by journalist Mitch Albom, obviously sparks curiosity and questions. But many repress asking those questions out of fear. The topic is perceived as taboo and difficult to confront, even though death surrounds us.
“One of the eternal questions that we, as humans, have is about the meaning of life and part of that discussion stems from what happens after life, which is death,” said Bree Harvey, vice president of cemetery and visitor services at Mount Auburn Cemetery. Death is a daunting subject to grapple with, but the growth of the death positive movement and death cafes bring conversations about death to a more nuanced, collective grappling.
Far from a grim consortium of goths, death cafes attract people from all ages and walks of life. In my discussion group alone, there was a nonprofit worker, scientist, mortuary school student, yoga teacher, hospice volunteer manager, retired social worker, and Mount Auburn Cemetery employee. For all but one, it was their first time attending a death cafe. Before beginning our discussion, we were told ground rules to foster a comfortable and respectful environment: listen, speak your truth, share the air, respect, accept and expect, and self-care.
Olson said she attended the death cafe because she couldn’t talk about death with people in her life. “If you go by statistics, I’m three-quarters through my life and very aware there’s an end. I’ve seen people very scared in their life at the end, and people who have not been actually. I do think sort of normalizing and talking about it is very normal.”
Cupcakes at the death cafe at Mount Auburn Cemetery.Tissues line a wall at a death cafe inside Bigelow Chapel at Mount Auburn Cemetery.
Talking about death could be increasingly common with climate change. The thought of a mass extinction lurking around the corner brings great anxiety and urgency to make the most of our lives. “To have to envision that happening in my near or far future is the scariest part for me,” said Michelle Frasca, a mortuary school student, at the death cafe. Because of climate change, Frasca said she would rather not be immortal if given the choice. “I’m so much of a pessimist that I’m like, it’s going to be terrible, I’m going to have to watch people die, I’m going to have to watch the world die.”
Corinne Elicone, events and outreach coordinator at Mount Auburn Cemetery, may only be 25, but she’s already bought a plot at Mount Auburn Cemetery. Elicone had an experience where medical professionals did not respect her grandfather’s end-of-life wishes. “He wanted no life support, he didn’t want to get food or liquids. He was in the resuscitating area to be revived. And I had to go into that hospital room and tell the nurses to unplug his fluids,” Elicone said at the death cafe. “It made me feel like there’s nothing I can do when it comes down to it, people are going to do their daily tasks.”
However, not everyone gets to make their end-of-life plans. Just like there’s inequity in life, inequity persists in death. “There’s no grand conversation on access to a good death. Who gets to die well in this country? People with money. They get comfort and they have care and they have shelter and they have music and soft linen. And people who don’t have money don’t really have options,” said Lashanna Williams, a death doula and executive director at A Sacred Passing.
Death grounds and humbles us, in addition to helping us prioritize our lives, said Eric Redard, a hospice volunteer manager, at the death cafe. Daily life is filled to the brim with pressures: You work until you die and along the way, fear failure and inability to fulfill your dreams. Is contentment all we can ask for?
Olson, who recently moved to a new home, said that she felt a newfound peace that isn’t quite happiness, but it is enough. “I could just sit on the back porch and listen to the crickets all night. I don’t feel like I need to do anything … I started thinking, if I should die anytime between now and the next 20 years, which is quite likely to happen, I want to feel this way.”
The leaves are green and awaiting to burst into shades of gold, orange and red, but in a couple months, they will fall to the ground and decay. Like fall, a season that brings both renewal and decay, death is full of dualities: denial and acceptance, mourning and comfort, and loss and living with intention. Death cafes show us we don’t have to reckon with it alone.
In a gorgeous plot of land that was once the site of the Battle of Arnhem in World War II, the Trappistine Sisters of the Abbey of Koningsoord in the Netherlands have opened a new cemetery where they will be providing natural burials.
“Natural burial” is a term that describes the burial practices of humankind for the majority of history. The process avoids embalming chemicals, as well as steel or cement vaults that are placed underground to protect the coffin from the natural course of decomposition.
These natural burials are becoming more popular today, as they are substantially more eco-friendly than the modern burial. According to Order of the Good Death, a website that supports the return to natural burial, modern burial practices can take a hefty toll on the environment, and squander valuable non-renewable and non-biodegradable resources. They write:
“American funerals are responsible each year for the felling of 30 million board feet of casket wood … 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.”
At the Trappistines’ new cemetery, known as Koningsakker — King’s Field — the nuns are trying to remedy these ecosystem compromising factors by returning to the old methods of burial. Hettie van der Ven of Crux news reports that bodies there are not encased within a casket, but rather wrapped in a burial shroud made from linen, jute, hemp and wool that will biodegrade much faster. This avoids wasting natural resources and burying forever materials that would have impeded the decomposition process.
The sisters told Katholiek Nieuwsblad Foundation, a Dutch Catholic news organization, that they were inspired to open the cemetery by their American sister-house, The Trappistine Sisters of the Abbey of Our Lady of the Holy Cross, in Virginia, who opened their own natural burial cemetery several years ago. The cemetery will provide the sisters with funds to sustain them, along with a book bindery and a restoration workshop.
While originally intended to serve as a Catholic cemetery, Koningsakker is now a public cemetery and the nuns welcome people of all faiths and walks of life, even those who come from foreign lands. The nuns feel that this was the right way to go, as it gives their graveyard an opportunity to impact a much wider range of the community. Riny Bergervoet, the cemetery’s location manager, said:
“Natural burials are a perfect fit for this day and age. At the end of their lives, people are looking for connection with the ground they came from and on which they are living … Choosing this as a resting place is a testimony to one’s identity. People know that we are praying for them on a daily basis, which they find very uplifting.”
CruxNews reports that Koningsakker currently only has four people buried on their property, but dozens have already reserved a plot. It’s only a matter of time before this “natural cemetery” will be full of people visiting their beloved lost.
With restrained camera work, “Departing Gesture” shows the process of a solitary funeral and burial, tended to by funeral-home staff.
By Sarah Larson
Jonathan Napolitano and Brian Bolster’s eleven-minute documentary “Departing Gesture” opens inside a suburban-style funeral home, with a long shot of a visitation room, where a white-haired man in a red necktie appears to be setting up for a wake. The casket is open, the flower arrangements generous and autumnal. The only people we see are the man in the coffin and the man taking care of him. “It happens more than you think,” a man’s says, in a voice-over. “Maybe ten or twelve deaths a year, I think, where their family would abandon them and never come back.” The film gives us a minute to contemplate this—the screen goes dark and shows a title card, and then the camera lingers on an exterior shot of the tidy funeral home. Who would abandon their late relatives, and why?
“Departing Gesture,” the first film in The New Yorker’s new series highlighting short documentaries, sheds light on this story patiently and with care. It focusses on the Sebrell Funeral Home, in Ridgeland, Mississippi, whose director, Trey Sebrell, is the person we have just heard speaking. Bolster’s camera observes the funeral home, both its public-facing rooms and its behind-the-scenes areas—offices, an embalming room—as we listen to Sebrell talk. “It’s one of those professions that, once you’re involved, you feel like you’re serving,” he says. “Even if I did not love working for myself, I still would be a funeral director and an embalmer at another funeral home in Mississippi.” As Sebrell goes about his work, in a suit and cufflinks, his movements have a calm certitude.
Sebrell Funeral Home has a partnership with a local charity, Grace House, which provides care and housing for people with H.I.V./AIDS; Sebrell cares for its dead, some of whom are ultimately abandoned by the family members who survive them. These families don’t hold a service and don’t want their relative’s remains. In the film, we watch the process of a solitary funeral, of sorts, and a burial, tended to by funeral-home staff.
Many of us have been in funeral homes like Sebrell’s and have attended memorials of various sizes—the wakes that teem with mourners, the calling hours that feel underpopulated. Either circumstance can enhance the sad surreality of death; in this case, the sadness is heightened further still. Bolster’s camera remains static, at a respectful distance, as it watches people at work: a man with flowers, a woman tending to the deceased’s makeup, pallbearers bringing the casket to the hearse. Other shots show us caskets, a lectern, the embalming room and its tools, embroidered seat covers that say “pallbearers.” The restrained camerawork subtly heightens the contrast between life and death, movement and stillness.
Bolster and Napolitano met on the film-festival circuit and have worked together on several projects; for “Departing Gesture,” Bolster shot and Napolitano edited. They met Sebrell in the course of working on a feature, still in development, about H.I.V./AIDS in the American South. The South has become the epicenter of the crisis in the United States, owing to factors including poverty, cuts to health-care funding, and social stigma. And H.I.V. infection in rural areas and smaller cities is on the rise. “I’m very interested in issues of regret,” Bolster told me. As a boy growing up in Massachusetts in the eighties, knowing that he was gay, Bolster watched reports of the unfolding AIDS crisis and the ignorance and fear that surrounded it. “Families abandoned their kids in hospitals,” he said. “I thought, This is what’s going to happen to me.” In 2019, an era of PrEP, undetectable H.I.V. viral loads in well-cared-for patients, and nationwide marriage equality, it can be stunning to see and hear about present-day ignorance that reminds us of decades past—for example, when Sebrell mentions a local funeral home that refused to collect a man’s body after learning that he was gay. “Departing Gesture” gives us a window into such stories with compassion, through Sebrell’s empathy and its own.
The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician.
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.
