Death Can Be Isolating and Dehumanizing. But What If It Didn’t Have to Be?

Death-care workers Naila Francis, Catherine Birdsall and Rebecca Maury / Photography by Julia Lehman

Within days of learning she had pancreatic­ cancer that had already spread to her liver, forming more than a dozen tumors, Elaine Arazawa had her whole family by her side.

Her three adult children returned to their childhood home near Hershey, along with their partners and two contentious cats, to support their parents through Elaine’s end-of-life journey. The same cancer that had killed her mother 17 years earlier was debilitating her digestive system. In just a few weeks, she could no longer eat. Her daily walks quickly gave way to days spent in her four-poster bed. One month after a CT scan first revealed the extent of the cancer’s spread, she went on hospice, opting against the grueling treatment she’d seen prolong her mother’s life but complicate her passing. Elaine was wracked with fear but embraced what was coming, determined to meet her death with grace and dignity.

Hers wasn’t a typical end-of-life experience. It was the fall of 2020, and a pandemic was raging outside the walls of her two-story suburban twin. While so many others that year died alone, loved ones barred from their bedsides, Elaine had her entire community with her. She had help navigating the byzantine medical system. She had time to reflect on all the joy and regret she carried and to write letters for her children to read after she was gone.

With her oldest son, she recorded videos­ to leave behind, contemplating her devotion to family and offering advice on raising the grandchildren she wouldn’t get to meet. With her middle son, she planned her funeral and memorial service­ and selected the outfit she would wear. With her daughter, her youngest, she shared quiet moments, finding a hand to hold through the darkest nights.

On Thanksgiving, when she was too nauseated by the scent of the cooking to open her bedroom door, she guided her children via video as they made a collection of family recipes, ensuring there was just enough stock in the stuffing. On Christmas morning, with a patch covering one eye to keep her vision from blurring, she opened a scrapbook her family had made for her. In this most bittersweet moment, she wept. They all wept.

Six days later, in her own bed, her family­ beside her, she held onto her final breath until the last of her children entered the room, and then she let go. She was 62.

If it takes a village to raise a child, the same was true of guiding Elaine through her final two months. As her son-in-law, and the most recent addition to her family, I saw the incredible effort required to give her the death she deserved — a good death, as much as one can be. The unique circumstances of her end-of-life experience made space for beauty and pain to cohabitate. She never lacked for that grace or dignity.

In the three years since Elaine’s passing, I’ve longed for a world where more people could be given the chance to die as she did — with the fullness of life surrounding her, and with complete support, emphasizing the emotional and spiritual, not just the medical.

In Philadelphia and beyond, a growing community of death-care workers — doulas, nurses, grief counselors, social workers, even funeral directors — is trying to build that world. They are reclaiming death and dying from the institutional model that has become the norm over the past century. By encouraging the restoration of community-based care at the end of life and opening conversations that pull death back from the fringes of our lives, they are trying to change the way we approach dying and the grief that lingers in its aftermath.

“Death doesn’t have to be awful,” says Catherine Birdsall, a former hospice nurse and one of two women who run the Threshold­ Collective, which offers practical­ and emotional end-of-life support and hosts death-related cultural events. “It can be warm. It can be intimate. It can be something that we don’t have to fear all the time.”

When Birdsall was growing up in rural New Hampshire, her community kept death close at hand. Every funeral took place at home, with bodies shrouded in cloth or beautifully dressed and kept cool for up to three days in the company of loved ones. In rooms decorated with candles and photographs, the dead lay in the midst of their community, which cried and laughed and healed together.

When Birdsall became a nurse practitioner, she thought she would focus on traditional midwifery. But she soon realized her calling was in a different threshold between worlds. For years, as a geriatric­ nurse, she saw how the medical system pushed her patients toward more treatment, more medicine, all aimed at extending life by a few more days.

“The foundation for the conversation is, ‘What can you do to keep this person alive a little longer?’” she says. “Instead of, ‘What can we do to make this dying time less stressful, more meaningful for family members, and more connective?’”

The pandemic gave Birdsall a jolt. She realized her work was meant to be communal,­ not clinical. She called an old friend, Rebecca Maury, a former physician at Thomas Jefferson­ University Hospital, where Maury had helped launch a hospice and palliative-care consultation service 18 years ago. Maury had felt drawn to death after close experiences during childhood left her at odds with the traditional process, with bodies zipped into bags and hauled away as a sign that everyone should start moving­ on.

“There’s an inherently human urge and desire to be close to our dead at that time, but we don’t know how to do that, because it’s so culturally unsupported,” Maury says in Threshold’s warmly lit home, tucked inside the first floor of the Maas Building, a community space in Kensington.

For three decades, Maury, who’s in her 50s, has had a vision for a space in which she could support what she calls “conscious dying” — being present for the end-of-life experience and building a relationship with the emotions it stirs up. As a clinician, she saw people’s resistance to the end lead to agitation and physical pain. She watched patients and their families cling to the hope of one last chance, prolonging their lives with medical interventions rather­ than turning toward death with open hearts and minds.

When Birdsall raised the idea to Maury­ ­of pursuing death work together, both women cried. Maury, like many in the death-care community, considers it her life’s work. She wants to support “a different­ way of being with death.”

At Threshold, she and Birdsall “fill in all the cracks and gaps” for clients, Birdsall says, working with a bigger toolbox than they ever could in a clinical setting. So much of what the dying and their loved ones need is “systems navigation,” Maury says — help making the many decisions that determine the course of a life’s conclusion. She is urging a departure from system-­based forms of care that can feel like so many algorithms coldly calculating the most efficient way to treat the dying. “As a human being, that feels like shit,” Maury says. “That doesn’t feel like you’re being held or anything.”

Caring for the body and spirit of a loved one — even by acts as simple as washing with a cloth or offering a warm bowl of soup — can transmit love. “It’s beautiful,” Maury says. “It doesn’t require any kind of medical training to provide.”

There is a richness available in the final weeks and days for those fortunate enough to know the end is near. Maury and Birdsall want more people to experience it — and for their loved ones to have a last opportunity to make sense of the journey that’s coming to an end.

“Everyone we talk with who has had a death experience where there’s been a little bit more space to explore these connections finds it to be transformative, enriching, deeply meaningful and healing,” Maury says.

Naila Francis was a journalist in Bucks County before her father’s death in 2012. When esophageal cancer began taking its toll on him, she returned home to St. Lucia to be by his side. It was her first intimate encounter with death, and she found herself unusually present in the moment, singing and praying alongside her family as she watched him surrender and find peace.

Still, she carried grief with her everywhere she went for years, searching for ways to soften it. When she learned about the work of death midwives and grief coaches, she knew it was a chance to help others seeking something similar. As co-founder of Salt Trails, a group that conducts community grief rituals, and at This Hallowed Wilderness, where she offers end-of-life and grief support, she is helping families reclaim their agency before and after a death. When guiding a person through the creation of a death-care plan, she focuses on what will replenish the spirit, bring back warm memories, and honor an individual’s humanity.

“People often envision death as a sterile, painful or dark passage,” she says, “but you can still have pleasure at the end of life.”

Francis and the rest of Philadelphia’s death-care community are not just supporting end-of-life journeys, but opening up profound conversations about death, dying and grief. If we live in a “death-phobic, death-denying society,” as she says, then bringing our fears out into the light is a path toward shifting that culture.

“There’s a lot that is being swept under the rug that is really wanting to come out and be held and be witnessed,” says Annie Wilson, a death doula at Sunset Companions.

You don’t learn about death and dying by thinking about it. You only learn by talking about it.”

Threshold’s arts and cultural events — death-related author readings, dance and stage performances, even a grief-and-loss salon — have made room for that witnessing. So, too, has the death-positive programming at Laurel Hill Cemetery, which has emphasized giving children the tools with which to navigate death. With leading voices and a vibrant arts scene — not to mention an abundance of medical institutions where the end of life is an everyday presence — “Philadelphia has the potential to be the death-positive hub of the East Coast,” Wilson says, echoing something Birdsall told me. Threshold exists to serve those in the midst and aftermath of a death. But perhaps more important, it serves as a physical gathering space for those who might benefit from exploring their relationship with death and grief — which is to say all of us.

“You don’t learn about death and dying by thinking about it,” says Russ Alexander, Wilson’s colleague at Sunset Companions. “You only learn by talking about it.”

To that end, the Death Cafe of Greater Philadelphia meets online twice a month for conversations about mortality, grief, and anything else on the minds of those who attend. It’s one of many such groups around the world inspired by the late Swiss sociologist Bernard Crettaz, who set up the first death cafe in the mid-2000s, after his wife died. A recent gathering of the Philadelphia contingent contemplated visiting with the body of a deceased loved one, medical aid in dying, and the irony that other major life events — graduations, weddings, births — are given months of preparation and planning, while funerals often feel thrown together. David Levin, a rabbi who leads the meetings, allows guests to chart the course of the conversations. An average meeting has more than 15 attendees, including returning regulars.

“We’re not actually talking about death,” Levin says. “We’re talking about living one’s life given the reality of death.”

As Levin makes clear, shifting the cultural approach to death isn’t just about giving more people a worthy send-off or working through the silt stirred up by their departure. It’s also an opportunity to help us all live differently, accepting our mortality rather than fearing and ignoring it.

“You’ve probably heard people say, ‘I was never more alive than when I learned I was going to die.’ It can be incredibly liberating,” Levin says. “Think of what that power could be if it wasn’t confined only to folks facing imminent death.”

In 2015, Annie Wilson’s brother-in-law died of a heroin overdose. The next year, her sister overdosed as well, then spent two weeks on life support after being revived. When it was clear her sister’s continued existence would be “nothing beyond brain-stem activity,” Wilson says, she was placed into hospice for a week before dying. Tending at her bedside through that week was the most meaningful work Wilson has ever done.

The twinned deaths inspired Wilson to become a death doula, so she could help families navigate those moments and give them something she sorely missed. “There wasn’t the kind of holding we needed as a family,” she says. She’s a choreographer by trade, and the experience also inspired her art. She incorporated wailing into a dance she performed after her sister’s death, only to later realize that she was unwittingly tapping into her family’s Scottish and Irish heritage with her version of keening, the vocal lament long used to mourn and pay tribute to the dead. She’s seen an influx of interest in the keening lectures and workshops she leads as part of her work as a death doula. In November, she led a grief ritual as part of a Day of the Dead celebration at Threshold.

Grief itself is beautiful. Grief is a profoundly rich place to explore, because it comes from love. By not being willing to allow grief to resonate, you’re limiting your experience of the love you have for a person.”

As much as the work of death care is about those contemplating and facing their own ends, it’s also about those still living after a death. Just as there is meaning to be made of dying and death, there is depth and purpose to the painful feelings that persist on the other side.

“Grief itself is beautiful,” Maury says. “Grief is a profoundly rich place to explore, because it comes from love. By not being willing to allow grief to resonate, you’re limiting your experience of the love you have for a person.” Twisting her fingers together in that universal sign for closeness, Maury says, “Grief and love are like this.”

Natalie Krak has come to realize something similar in the wake of two pivotal deaths. In August 2020, her father was in a bicycle accident. He spent four days unresponsive on a ventilator before dying. For Krak, the experience was both “surreal and difficult.” One year later, as her family prepared for his funeral, which they’d delayed in the absence of a COVID vaccine, her mother-in-law’s breast cancer brought Krak and her husband to the oncology ward of the same hospital where her father had died. Just a week and a half after Krak finally­ memorialized him, her mother-in-law died.

Krak considered calling Naila Francis after her father’s passing, but it was only after her mother-in-law’s death that she knew she needed help addressing the overwhelming grief she carried. For two years now, she has turned to Francis for regular conversations that have helped her process and understand her losses. Krak has been to therapy before, she says, but finding support for her grief is something entirely different. Francis has “truly changed my life,” she says: “She showed me it’s okay to wander in the darkness and I don’t have to be afraid of feeling lost. And that grief can actually be a friend if I let it.”

Francis has helped Krak soften her grief, made her more aware and present in her daily life, and showed her how she can maintain connections to her father and mother-in-law. In one guided meditation, Francis led Krak through a walk in the woods on which she visualized her father seated on a bench. She could feel the solidity and comfort of his arm laid over her shoulder — ­­a “visceral” feeling to which she often returns as a way of keeping him close.

“You realize when you lose people that you’re going to lose everyone, one way or another, and that’s terrifying,” Krak says. “It’s been a huge benefit to have someone who understands how to talk about that.”

Finding conversation and the support of a community like those gathered by Threshold or in the death cafe can offer relief from the isolation grief imparts. It may be the American way to put our heads down and trudge onward, pretending we’re doing fine, Krak says, but we can’t simply will away our emotions. Nor should we want to. Our grief is also a way of remembering our dead.

As more people change their ways of thinking about and being with death, Birdsall says, we’re at the base of a wave still gathering itself. But she sees more people stepping into the threshold, opening themselves up to the work she and Maury and others are doing.

“People don’t even know they’re hungry for it,” Birdsall says. “They hear about it, and they’re just like a moth to a flame.”

Aditi Sethi, the founder of North Carolina’s Center for Conscious Living and Dying, says she has seen an outpouring of support that reflects a slow but steady shift in mainstream thought about end-of-life concerns. Her organization offers community-led end-of-life care, education and doula training in a model something like what Maury envisioned so many years ago. Sethi thought the center would see a trickle of people interested in helping carry out its mission. But before she’d even opened its doors, more than 200 volunteers stood ready to step in.

“Conversations about death, dying and grief are becoming commonplace again around the dinner table. It’s happening,” Sethi says. “People are remembering death is not a medical event, and networks of care are leading the way.”

Patricia Quigley, a supervisor, manager, and licensed funeral director at Laurel Hill Funeral Home, says she’s noticing incremental change as well. Where nursing homes once closed their doors to prevent residents from seeing deceased residents being transferred, some now perform special rituals to honor the dead, placing bereavement quilts over their bodies.

Francis offers me a hopeful vision, one she shares with other death-care workers who won’t let death be an afterthought any longer. It’s a vision of a world in which we’re all graced by the love and support that defined Elaine’s final two months.

“Someday, people won’t really need us,” Francis says. “We will have come far enough that people realize they can take care of their dying.”

On a damp December afternoon, with the sky a wall of soft grays, my wife and I walk up a metal staircase to the Rail Park above Callowhill Street, where a small team of artists has set up The Thread, a space for Philadelphians to connect with their grief. In a makeshift booth, visitors can use The Thread’s phone line to leave a voicemail for a loved one who has passed — or pick up a disconnected phone and speak their thoughts into the wind. The installation was inspired by the Wind Phone, created by Itaru Sasaki in Otsuchi, Japan, in 2010, to cope with his cousin’s passing.

“It takes courage to know hurt, to live with death,” reads a poem inside the booth, which is covered in a rainbow of ribbons­ tied to its wooden walls. Each of the hundreds­ of ribbons left here and along the fences that line the park represents someone loved and lost by a recent visitor. A dozen empty ribbon spools lie beneath the phone.

We sit for a few minutes, quietly remembering Elaine. I think about her final two months and the grief her passing left behind — a feeling that has no half-life. I think about how grateful I am to have been there at all, how grateful I am that she was surrounded by love throughout her journey, and how I hope for something similar when my time comes. We both let out a tear. My wife takes a moment to herself, and then we each take a ribbon, one white, one yellow, tie them on the booth, and go.

Published as “A Better Way to Die” in the February 2024 issue of Philadelphia magazine.