The Death Disrupters
Concerns about the American way of death have been in the spotlight for decades now—highlighted in stories on everything from overpriced funeral services to the toxicity of embalming practices—leaving people to wonder if there’s a different way to die and a more responsible end for what we leave behind. In Topic’s new documentary series The View From Here, five terminally ill people look back at their lives and share their thoughts about their own impending deaths. Here, Topic speaks with some people working to change death for the better.
Death doula; Los Angeles
Alua Arthur has strong feelings about when people should start planning for death. “Now,” she says. “Immediately, if not sooner.”
Arthur is a death doula, and just as a traditional doula ushers people through the process of giving birth, she helps prepare people to die. Through her Los Angeles–based business, Going with Grace, the 40-year-old provides a suite of services that includes getting financial affairs in order, making health-care decisions, even identifying the specific sounds and smells clients want at their deathbeds. Arthur also works with her clients’ families, providing support throughout the dying process and helping them wrap up affairs afterward.
Arthur says there are lots of tiny things people don’t think about when it comes to planning for death, such as cataloging passwords for their online accounts, canceling driver’s licenses, and designating people to access their personal bank accounts after they die.
“Somebody has to figure out how to run and then shut down my life without access to the innate knowledge I have,” says Arthur. “Oh, the key for the safe-deposit box is in the kitchen cabinet where the odds and ends are. Who would know that?”
Arthur’s clients range in age, but they are typically in their 60s and suffering from cancer. Others are healthy and simply planning ahead—which is how it should be done, she says. She recommends people start preparing for death after college, when they are likely to have acquired individual bank accounts, credit cards, and other accoutrements of the modern age. There are reasons for doing this that go beyond the practical, says Arthur.
“Talking about and preparing for death has the value and benefit of supporting us and engaging us fully with this life that we’ve got right now,” she explains.
Volunteer, Final Exit Network; Chapel Hill, North Carolina
Fran Schindler, of the Final Exit Network, has witnessed about 80 deaths, every one carefully planned.
A right-to-die nonprofit, the Final Exit Network provides education and support for competent adults suffering from terminal illness, dementia, or chronic or progressive physical disabilities who choose to end their lives. Schindler, whose background is in nursing, lives in North Carolina and started volunteering for Final Exit Network in 2007. Weathering a health scare of her own, she had begun seeking information on how she could painlessly end her own life. She is now a senior exit guide. FEN exit guides undergo several days of training to begin at the level of associate and become senior exit guides after extensive field experience. Guides, who typically work in pairs, educate individuals who pass the organization’s screening process on their end-of-life options and they will sit with the person while he or she dies. Schindler says it would be irresponsible for her to go into detail about the network’s preferred method of inducing death, but she says it involves the use of an inert gas, requires a hood, and that “it’s fast, it’s painless, and it’s 100 percent effective.”
Schindler spends considerable time with the people in her caseload, and often meets with their families as well. Many become something like friends; she has hugged the dying and held their hands. “We will travel wherever the people are, and when they are ready to end their lives, we will sit with them while they die,” Schindler says. “I may give them a kiss on the cheek if they’re somebody that I have known well.”
At the first death she attended, the man who was dying informed Schindler that he wanted to go out of the world as he came in—naked. One woman chose to die on her birthday, which she celebrated at a cabin on a lake with family and friends before ending her life.
Schindler has seen alienated family members reconciled at the deathbed and describes her work as “probably the most meaningful and important work and the highest form of nursing that I have ever done.” But it is not without risk; Final Exit Network members have been prosecuted in states that have laws criminalizing assisted suicide, even though Final Exit Network volunteers do not actually assist individuals in ending their lives.
“They must be mentally competent and physically able to carry this out themselves, because we do not do that,” says Schindler. “We do not aid, abet, assist, encourage, or solicit anyone to end their lives, ever.”
But for Schindler, the knowledge that painless death is an option is a comforting one. “You can choose to get out if you want to get out,” she says. “To me, that takes all that fear and worry away. You don’t have to go through agony at the end of your life.”
Founder, Recompose; Seattle
Katrina Spade has always been fascinated by the human body, but she was working toward her master’s in architecture when she got curious about what happens to bodies after death. What would her loved ones do with her body? she wondered. She decided to investigate the options. “I was astounded by the environmental impact,” she says of the burial process.
Traditional burial involves the manufacture and transportation of tombstones and coffins, the burying of hardwood coffins—often encased in concrete liners—in the ground, and the land use and upkeep of cemeteries. Cremation calls for the burning of fossil fuels and emits carbon dioxide and mercury into the atmosphere.
The levels of environmental harm of conventional burial and cremation are about equal, Spade found, so she decided to design a better way, a process she calls “recomposition,” in which bodies are placed in vessels with materials like straw, wood chips, and alfalfa. Tiny microbes that live in the human body go to work, raising the temperature inside and breaking everything down, including teeth and bones. After a month, the result is a rich topsoil that can be returned to the earth. It’s an accelerated version of a natural process, Spade says.
“If you went out to the forest floor you’d have leaf litter and probably a dead chipmunk,” she says. “And pine needles, and sticks, and bark. These things decompose over time and create topsoil.”
Based on Spade’s preliminary findings, she estimates that choosing recomposition over burial or cremation could save a metric ton of carbon per person. Spade, who plans to make the method available to the public through Recompose, a Seattle-based public-benefit corporation she founded in 2017, is working with Washington’s state legislature to make recomposition a legal option for the disposal of human remains, which she hopes will happen by the end of 2019. If and when it does, Spade and her team will then turn their attention to designing and building a Recompose facility: they envision families and loved ones washing the body there and helping to deposit it into the vessel in which it will be turned into soil. (An artist’s rendering depicts a light-filled space with vaulted skylights, gardens, and seating areas set in front of a wall of vessels arranged in a kind of honeycomb structure.)
“What is the work inherent in caring for the bodies of our dead, and why does the funeral industry do that work for us?” Spade asks. “What value would there be in families actually taking back that work?”
David W. Peters
Army chaplain; Austin, Texas
When David W. Peters deployed to Baghdad as an army chaplain in 2005, he wrote a letter to be delivered home in the event of his death. Thankfully, Peters never had to send the letter, and he never encountered anyone else’s death on the battlefield, because, he says, when people got hurt or died they would be “whisked away” and flown out of the country. It was only after he returned to the United States and began serving in military hospitals, including doing a three-year stint at Walter Reed National Military Medical Center, in Bethesda, Maryland, that he began tending to those who were dying.
As a hospital clergyman he was in the unusual position of getting to know people—and often their families—only at the ends of their lives.
“You act normal in these situations,” he says, “so the family can realize they can act normal, too. As tragic as it is and as earth-shattering as it is that this person is not going to be with us anymore, it’s a very normal thing that happens to us.”
Peters has heard family members argue with the dying, asking them not to go. Much of his work as a chaplain involved simply being present. “I think they really want somebody to listen to them because they’ve known they’ve been dying for a long time and nobody around them seems to want to accept that,” he says.
Peters left hospital work in part because his proximity to constant death was taking a toll on him, and since 2016 he has worked as an associate rector at St. Mark’s Episcopal Church in Austin, Texas. Now he gets to know people before they die and finds that a lot of the work he does on behalf of dying parishioners skews toward the practical. People have very strong opinions about what they want their funeral to be like, and Peters encourages them to pick out the hymns and scripture readings they want performed ahead of time. “It helps people prepare for death,” he says, “if they have a say in what happens to them after they die.”
Cardiac nurse, founder of Project 660; Flagstaff, Arizona
Jessica Hanson has worked in health care for 15 years and readily admits that for most of those years she “sucked” at death. And she’s not alone. Medical professionals, she says, equate death with failure.
“Inevitably people die, but we’re taught that we need to save them, and if we can’t, we’re ashamed of not being able to do it,” says Hanson.
Hanson knows this from personal experience. Almost three years ago, her 22-month-old son, Mason, was accidentally run over by his father in their front yard. Hanson performed CPR on Mason, and after he died she lay with him for hours in the hospital. She kissed his toes. She took a picture of his hand resting on her chest; a photograph that now hangs in her house. “It was everything I needed to set a solid foundation for healing,” explains Hanson. “When I realized that a death could be beautiful, I decided to start helping people die better.”
She soon started a program called Project 660—the number of days that Mason was alive—and began giving classes to health-care professionals on “orchestrating death.” Hanson prescribes seemingly simple practices for a better death experience, from allowing people to remain in the room while their loved one is receiving CPR to letting them touch the body after death. She encourages her students to have conversations about what they would want a loved one’s death story to look like and apply that to their own work.
Hanson recalls the ways that her nursing work has changed since the loss of her son. She remembers a time, before Mason’s death, when she performed CPR on a woman as the woman’s husband of many years, her high school sweetheart, stood by. “I didn’t give him anything; I didn’t show any emotion,” Hanson explains. “I will cry with my patients’ family now. I’ll hold their hand, and I will just be with them in those moments, because I’m not scared of it anymore, and because I know that it can make a difference in the rest of their lives.”
Designer and research associate at DeathLab; New York City
Death has a real estate problem. “The problem with the headstone is that it represents a plot of land—probably about ten feet deep, eight feet long, and four feet wide—that somebody who is not here anymore owns in perpetuity,” says Pardee, a designer and research associate at Columbia University’s DeathLab, an interdisciplinary research-and-design group that is rethinking the urban cemetery and exploring ecologically sound alternatives to practices like cremation and embalming.
According to DeathLab research, 50,000 people die annually in New York City, where no new cemetery has been established in over 50 years and those that do exist are at or near capacity. And that’s an issue not limited to New York: as urban populations grow everywhere, cities all over the world are running out of places to bury the dead. Meanwhile, the cost of available burial plots is skyrocketing. (A three-person plot at Brooklyn’s Green-Wood cemetery cost $17,000 in 2016, up from $5,000 in 2001.)
New kinds of cemeteries are already cropping up globally. In Jerusalem, the Hevra Kadisha burial organization began construction in 2015 on a subterranean burial system of 22,000 crypts in Har Hamenuchot, the largest cemetery in the city, which is slated to open in 2019. In Japan, space-saving high-tech columbariums (which store cremains instead of corpses) have come into vogue; the small Ruriden columbarium in Tokyo, which opened in 2006, has has 2,045 drawers, each one appointed with an LED-lit Buddha statue."
The cemeteries dreamed up by DeathLab—the brainchild of director Karla Rothstein—are even more radical in their reinvention, integrating death, mourning, and remembrance directly into the urban landscape. One DeathLab design, Constellation Park, calls for bodies to decompose in pods suspended beneath the Brooklyn Bridge; the decomposing biomass would be converted into energy to light up the pods, creating a celestial glow. Once the remains were finished breaking down, and the glow was extinguished, family members could collect the remaining matter, which would be similar to cremains, and open up the vessel to a new body.
“Who is the city really for? Is it for the living or is it for the dead?” asks Pardee. “Obviously, we think there can be space for both. However, I think we have to accept that the way our funeral infrastructure is set up right now, it’s not conducive to either.”