Death for patients in U.S. intensive care units may look a lot different for people with limited English proficiency than for native speakers, a large study suggests.
About 8.5 percent of U.S. adults don’t speak English as their primary language, researchers note in Mayo Clinic Proceedings. While communication is crucial for decision-making at the end of life, it’s not been clear how language skills might influence the type of care dying patients receive.
For the current study, researchers examined data on 27,523 patients admitted to intensive care units (ICUs) in a large academic hospital over a three-year period. The total included 779 people, or about 3 percent, with limited English proficiency.
Death rates in the ICUs were the same no matter what language patients spoke most fluently, averaging 2.8 percent for both native speakers and those with limited English proficiency.
But among patients who died in the ICU, those with limited English proficiency were 62 percent less likely to have orders for comfort care before they died, and they took an average of 19 days longer to transition from active treatment to only measures designed to ease pain and suffering. Non-English speakers were also 26 percent more likely to be placed on breathing machines and 36 percent more likely to be put in restraints.
Patients with limited English proficiency were 38 percent less likely than native speakers to formally request what’s known as a do-not-resuscitate (DNR) order when they entered the ICU. A DNR tells hospital staff not to take measures to revive them if their heart stops working.
Non-English speakers were also 77 percent less likely to have an “advance directive,” a legal document that spells out what type of care patients want and who should make decisions on their behalf when they’re no longer able to communicate.
“This study shows that the end of life care that patients with limited English proficiency receive is different than for those who do not have language barrier,” said lead author Dr. Amelia Barwise of the Mayo Clinic in Rochester, Minnesota.
“This may be because more patients with limited English proficiency have an authentic desire to die with more aggressive medical therapies or that communication or other barriers prevent health care teams from optimally assessing and implementing a less aggressive approach for dying patients with limited English proficiency,” Barwise said by email.
The differences persisted even after the study team accounted for other factors that can independently impact care at the end of life like race, religion and age.
The study wasn’t a controlled experiment designed to prove how language abilities might directly impact care at the end of life. Another limitation is that it looked at a single hospital and might not reflect what happens elsewhere.
Even so, the findings resonate with other research suggesting that limited English skills can influence how patients are treated, said Dr. Gary Winzelberg, a researcher at the University of North Carolina at Chapel Hill who wasn’t involved in the study.
“Patients with limited English proficiency are less likely to have advance directives because these documents were not designed for patients with low health literacy or patients from diverse cultural backgrounds,” Winzelberg said by email.
Interpreters can help.
“Families should insist on having an interpreter present during family meetings and other communication during which patients’ condition and care options are discussed,” Winzelberg added. “If an interpreter cannot be physically present, there are alternatives including connecting to an interpreter by phone – families should not be asked to serve as interpreters.”
Dan Kuester and Kirsten Farnsworth had only been married for two months when Kirsten was diagnosed with cervical cancer. Between aggressive treatments over the course of the next five years, Kirsten and Dan built a life together: they finished graduate school programs, traveled, and adopted a rescue dog they named Sputnik.
But the cancer came back in the summer of 2017, and the couple knew it was time to accept facts: At 32, Kirsten was going to enter the last phase of her life.
They decided to hire an end-of-life doula — a death doula or death midwife — to help them through the process.
“I’ll admit neither of us was incredibly familiar with the idea of an end-of-life doula,” Kuester says. “We didn’t have any kids so we had no familiarity with doulas as far as midwives go.”
The term doula is often associated with birth, a Greek term that loosely translates to a woman helping another woman. Birth doulas are trained professionals who provide mothers with emotional, physical and informational support before, during and just after birth.
Death doulas do the same, just at the end of life instead of the beginning.
Across the country, programs are cropping up that teach people how to become end-of-life doulas, holistic caregivers who support those in the process of dying (and their loved ones) with a variety of services, from practical tasks like creating a plan for the final days of a client’s life, to the psychological work of internal and external forgiveness and acceptance. This is not hospice care, but something supplemental; while hospice care keeps patients comfortable with medication, provides relief through treatments and assesses ethical medical issues with the family, death doulas are more like traveling companions, there to walk with clients and families toward something wholly unknown.
An end-of-life doula can help with cleaning or cooking, run errands or just be physically present for a client to talk to about things loved ones just aren’t ready to hear — like the reality that the end is coming.
Boulder is home to one such end-of-life doula program. Tarron Estes founded the Conscious Dying Institute after a career working as a transformational learning consultant in health care systems showed her what it looks like to die in the United States.
“When I realized [health care systems] really weren’t talking about [death], I had a very strong vision: You will change the way people are cared for in senior communities,” Estes says. “It made sense to me that if I wanted to change how death is happening in America I would do what I do best, which is work with individuals and help them experience personal transformation that also gives them a career in end-of-life care and healing.”
Through the Conscious Dying Institute, students can complete several end-of-life education programs, including a two-phase, eight-day onsite Sacred Passage Doula Certificate Program.
Nicole Matarazzo was one such student. She went on to become a doula for Kirsten Farnsworth in her last months.
Matarazzo had spent most of her professional life working directly with death; after college as a child life specialist in pediatrics working with children who were born HIV positive, then with patients receiving bone marrow transplants.
She went on to teach kindergarten and become a massage therapist, then eventually, after having children, went to work in health care at elementary schools in Boulder, where she says her role was as much about providing emotional support to kids as it was about caring for illness and injury.
About four years ago, a friend of Matarazzo’s was diagnosed with cancer for the second time, and she asked Matarazzo to care for her in her remaining days.
For a year, Matarazzo walked through the last phase of her friend’s life with her. Without question, it was emotionally the hardest work Matarazzo had ever done.
“A few hours after we had called hospice to come and be with us, [a hospice worker] asked me, ‘Where did you get your training?’” Matarazzo says. “It prompted me to wonder: ‘Why did you ask me that? How are people dying in this town?’”
The answer from the hospice worker: “Often alone and scared.”
“I heard that as a message loud and clear,” Matarazzo says. “I knew at some point I would figure out how I was going to be a player in that arena, so that there are less people dying afraid and alone.”
Trends in American lifestyles have raised the risk of dying alone: the divorce rate for 55- to 64-year-olds doubled from 1990 to 2015, according to the National Center for Family & Marriage Research, and once divorced, people are remarrying less often. One study found that nearly 7 percent of U.S. adults 55 and older had no spouse or biological children, and that number is predicted to surge over the next 50 years.
Perhaps, then, it’s no coincidence the death doula movement is flourishing.
“I think it’s been slowly beginning, quietly, kind of a grassroots movement,” says Jeri Glatter, vice president of the nonprofit International End of Life Doula Association (INELDA) based in New York City.
“I think a big part of [the rise of the deal doula movement] is the people who said in the ’80s that they did not want to give birth a certain way — that they didn’t want to be put in a white hospital and have a white male say, ‘You’ll go to sleep, and you’ll wake up, and I’ll hand you a baby’ — I think those same people are turning 70 and 80 now, and there’s an awareness that they don’t want to die the same way; they don’t want to be disconnected from what’s happening.”
Glatter, like Matarazzo, came to her work after caring for a loved one at the end of their life. The experience, somewhat counter-intuitively, filled Glatter with a “sense of joy and enlightenment.” A friend said she should consider becoming a death doula.
“I Googled the term, as per my friend’s direction, and I found the Open Center in New York City,” Glatter says. “It was the only thing listed; one Google response to ‘death doula’ [at that time].”
At the Open Center’s Art of Dying Institute program, Glatter met Henry Fersko-Weiss, a clinical social worker who created the first end-of-life doula program in the U.S. at a hospice center in New York City in 2003. Fersko-Weiss had studied the work of birth doulas, not because he was interested in becoming one, but because he saw the parallels between supporting people at the beginning of life and supporting them at the end of life. After more than a decade of moving from hospital to hospital teaching his volunteer-based end-of-life doula program, Fersko-Weiss dedicated himself fully to the cause and opened INELDA in 2015.
“Our training and our model of care has always been based in this volunteer, being-of-service format,” Glatter says.
While INELDA teaches courses on business development for those who want to professionally practice end-of-life doula work, Glatter says these courses always focus first on providing ways to make care accessible to those who need it, through sliding scale fees, pro bono work and other forms of payment that may be available to people, like trading services.
“We focus first on what brought [a student] to this work and the meaning behind the work, [their] intentions with this work,” Glatter says. “The term ‘calling’ is probably the most common term we hear from people who take training and business development courses through INELDA. We try to keep that in the forefront of the conversation. After that there is the understanding that if you are approving a service and someone is in a position and wants that support through a higher practitioner, there’s nothing wrong with being paid for that.”
In early 2017, Fersko-Weiss told USA Today that trained and certified non-volunteer end-of-life doulas typically cost between $40 and $100 per hour, with flat rates often applied during a patient’s final days so that round-the-clock care can be provided. End-stage doula services, he said, range from $1,200 to $4,000.
Glatters says that she, Fersko-Weiss and INELDA president Janie Rakow have never charged for their work.
Some doula training organizations are focused solely on training volunteers, like the nonprofit Doula Program to Accompany and Comfort in New York, which has been operating since 2001. Each year the program accepts between 13 and 15 volunteers from an application pool of 300 or so. These volunteers go into hospitals and meet with patients at least once a week through their dying phase.
To executive director Amy Levine, end-of-life doula work is about “lending our humanity.”
“We can do this for each other as human beings,” she says. “Even just 15 minutes together every week. It changes both lives.”
Nicole Matarazzo says determining appropriate payment for her services is an ongoing learning process, and she works to provide as much pro bono work as she can.
“My biggest challenge as a death doula is the exchange of money because this work to me is so sacred,” she says. “Having the conversation around what I do makes me nervous because there’s integrity and accountability around what I do.”
Becoming a certified doula can be pricey as well. The End of Life Doula Certificate offered at the Conscious Dying Institute costs $2,995 and provides nurses with 66 Continuing Education for Nurses (CNE) credits. At INELDA, it costs $750 to attend a two-day training, $100 for a current membership in INELDA, $35 to request a certification packet, and a $75 application fee, bringing the total to $960.
Currently there is no regulatory body that standardizes practices around end-of-life doula work, but most programs offer similar courses structured around providing emotional and spiritual support, assisting with unfinished business, creating visualizations, deciding how the space will look and feel at the time of death, designing rituals, developing a vigil plan and any other nonmedical gaps in care. There’s no regulatory agency for birth doulas, and most end-of-life doulas feel such an agency might limit access.
“As soon as hospice became a Medicare benefit it got whittled down year after year until it became so hard for people to get what they need,” says Tarron Estes of Boulder’s Conscious Dying Institute. “What I hope is that my work goes more and more into health care systems so that people who are on the front line can have this kind of training, so that they are supported to be who they are and they can stand for wonderful, beautiful deaths. I want CNAs to have end-of-life certifications. I want systems like Kaiser to work with me to figure out how to do a training for their employees so … more of this work can get in the minds, bodies and hearts of people that are called to do this work.”
The interest in improving end-of-life care is even beginning to infiltrate medical schools, where students are required to attend a birth, but not a death. Atul Gawande, a surgeon in Massachusetts, is leading the charge to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.
One thing seems certain: the need is there.
When Kirsten Farnsworth passed on May 30 of this year, her husband Dan Kuester helped his mother-in-law wash Kirsten’s body with essential oils, an ancient ritual that Nicole Matarazzo, as their doula, suggested. Kuester said that of all the planning Matarazzo helped with — visualizations, planning for the vigil and emotional support — washing the body gave him the most peace, the closest thing he can describe as “closure” on an experience that never truly ends.
“Nicole, I think partly by virtue of the fact she could come in and not be responsible for Kirsten’s physical health, it made it easier to trust her in an advisory role,” Kuester says. “She also brought a mindful and compassionate and extremely calming presence. I think both Kirsten and I felt much calmer on days when we would have meetings with Nicole, being able to plainly state what it’s like, some of these things that were in front of us that we weren’t completely sure of how it was going to go. She did a great job of showing us how it was, how these experiences were going to go and what options we have to impact the ways the experience goes.”
Death, reminds Tarron Estes, is not a medical event.
“It’s just sad because we don’t know how to be with death anymore,” she says. “Thank God we’re all beginning to think about how to do this better because none of us, myself included, people who have had the benefit of transformational work and sustainable energy and sustainable lifestyles and all the bells and whistles that a Boulder person and people who are conscious have had all their life, even most of us don’t think about it and don’t know what else there is to do. Believe me though, we’re going to be wanting to know about it.”
Funeral customs are changing dramatically, leaving families with more decisions to make at just the moment they may be least prepared to make them. Making decisions ahead of time honors “ancient wisdom.”
Yogi Berra once quipped, “The future ain’t what it used to be.” If there is a time that I see church parishioners facing Yogi’s confused logic, it is when dealing with decision making for a funeral and burial of a loved one. American culture is going through a tumultuous season of cultural change. The last time that people want to deal with more change is during the loss and grief of a loved one’s death. But the reality is that the American funeral experience has changed and is continuing to change dramatically.
When I performed my first funeral in 1993, there was a certain set of expectations for what would happen when someone died. It almost always went like this. Three days after the person died there would be a funeral, or rarer then, a memorial service (a worship service without the body of the deceased). The evening before the funeral there would be a visitation at the funeral home to view the body and share condolences with the family. Usually at 11 a.m. or at 2 p.m. the funeral would take place at the church. Then the family, followed by friends, would drive in procession with headlights on to the cemetery for a brief committal service. After the committal the family returned to the church for a meal and time to visit. On occasion I have been invited to drop by the family home afterwards when all had been finished and there was nothing left to do but sip bourbon and visit.
Yes, this is a very Presbyterian, and a very Southern Presbyterian funeral experience. We value brevity when it comes to funeral worship services, and we value lingering when it comes to visiting afterwards. Of course, there are many variations on a theme played out in different religious traditions, and all of them have their strengths and weaknesses. I admire the African-American Baptist tradition, which has been able to resist many of the negative consumeristic trends involved with funerals, but I do not possess the proclamatory wind to preside for several hours over a funeral service.
Things have certainly changed from when a traditional schedule was the expected norm. There are many reasons for the changes that now often require families to design their own funeral rituals. One of the most significant is that in 1970 only 5% of the American population was cremated after death. Last year 55% chose cremation. The cost of burial with embalming of the body, metal casket and metal vault can run about $11,000, and of course this has been a motivating factor for choosing cremation.
Not too long ago I performed a funeral for the beloved family doctor of his remote rural village. He had made all the arrangements well in advance of his death. Ben was buried in a simple pine box that he had made himself and was interred on a hill at the back of his farm. He had a friend who had prepared his body after death and kept the body refrigerated until his family could see it. The doctor was a keen environmental steward of his farm as well as his community, and he did not wish to add the mixture of formaldehyde, methanol and humectants to the soil of his farm. This makes me wonder what really is traditional after all, because the doctor’s method would have been common place before industrialization and the Civil War. (Check out this website for different state requirements for a funeral at home.)
Ben was on to something. Think about what you would like your funeral to be. Talk to others about it. Don’t get scared off by our American cultural reluctance to have a conversation about death. Do you want to be cremated or embalmed? There are other options now to cremation than burning the body; it can also be done with water. Do you want a religious service to mark the occasion? What will be most helpful for your surviving family? I think that religious services can be deeply moving and genuinely helpful for people. But I should think that. I am a pastor. I know that this is not true for everyone. The point is to think about this beforehand and share with your family what is important to you and make plans for it.
Let me put in a word for funeral home directors. It has been my good fortune to be friends with a couple of them and a golf partner with one of them. I have often heard terribly negative caricatures of funeral home directors, most of the time from people whose only experience has been attending a few funerals. My experience has shown them to be people who pursue their work as a calling. I have watched them at times provide funeral services for poor families with disregard to the business end of their work. If you are interested in learning what a funeral director’s life is like, then read Thomas Lynch’s The Undertaking: Life Studies from the Dismal Trade. He is an American Book Award winner writer and a funeral home director in his small town of Milford, Michigan.
Lynch gives us, who live in what is often a death-denying culture, this sober reminder.
This is the central fact of my business – that there is nothing, once you are dead, that can be done to you or for you or with you or about you that will do you any good or any harm; that any damage or decency we do accrues to the living, to whom your death happens, if it really happens to anyone. The living have to live with it. You don’t. Theirs is the grief or gladness your death brings. Theirs is the loss or gain of it. Theirs is the pain and pleasure of memory.
The practical wisdom of these words reminds us that when the time finally comes for you or for me as it will for us all, water cremation, fire cremation, embalming, metal vaults, pine boxes, columnbariums, floral wreaths, funeral homilies, favorite hymns, presented flags and headstones will not matter to us. But some of these things will matter and give meaning to those who survive us.
I realize I’m not making any of this process easier. That’s my point. It’s not easy. And the ever-growing options only make for more complicated decisions. But reflecting upon death and dying and thinking about what our end will be like for others make us better human beings. And that is nothing new at all. That is ancient wisdom.
A legendary design firm, a corporate executive, and a Buddhist-hospice director take on the end of life.
By Jon Mooallem
There’s an ugliness — an inelegance — to death that Paul Bennett gradually came to find unacceptable. It seems to offend him the way a clumsy, counterintuitive kitchen tool might, or a frumpy font. At first, that disgruntlement was just “a whisper in my mind,” Bennett explains. “But it’s gone from being a whisper to a roar.” The solution, when it finally occurred to him, felt obvious. “Oh,” he told himself. “You need to redesign death.”
Bennett is 51 — 30.7 years to go, if the demographic data is reliable — a blindingly energetic British man with unruly brown hair. He works as chief creative officer at Ideo, the global design firm that’s renowned for its intuitive, wizardly touch. Over its 25-year history, as Ideo has expanded from simple product design into branding, organizational design, and management consulting, it has worked in virtually every corner of our economy: A list of recent clients includes Genentech, Bank of America, the Centers for Disease Control, JetBlue, and the Today show. Ideo’s founders designed Apple’s first mouse and the stand-up toothpaste tube. Its designers have overhauled San Francisco’s public school-lunch program and helped reorganize government agencies in Singapore and Dubai. They’ve developed a toilet for low-income families in Ghana. They’ve built a better Pringle.
Often, the firm’s brilliance rests on showing clients something obvious that’s been overlooked, or cutting through buildups of false assumptions. “I think we sense-make really well,” Bennett told me. One example he likes to cite involved attaching mirrors to the gurneys at a Minnesota hospital so that patients could actually make eye contact with the doctors and nurses wheeling them around.
Bennett works out of Ideo’s stylish San Francisco office, at Pier 28 on the Embarcadero, and like others operating at the top of the Bay Area’s innovation economy, he doesn’t have a concrete job description: It can be hard for an outsider to sense-make what he does. According to his company bio, he is responsible for “cross-pollination of ideas and insights” and “traveling, learning.” As Ideo has grown, the company has delved into more abstract, conceptual work, driven not by specific clients but by Bennett and the other partners’ own evolving fascinations. Bennett’s role is to stoke the firm’s bigger ambitions, then go out and excite clients about them, too, transforming those personal obsessions into business opportunities. (When we met one morning last spring, he’d just returned from chatting about “reinventing Judaism” with some unbelievably fantastic rabbi in Los Angeles. “I love this guy,” Bennett raved.) He is quick-witted, blunt, and irrepressibly optimistic about nearly everything. In meetings you can feel junior designers’ eagerness to impress him — to electrify him — and he carries himself with a kind of fidgety, ecstatic gravitas. Imagine Don Draper played by Ricky Gervais.
Bennett’s fixation on death began with the death of his father. He was close to his dad; in a recent talk, he likened his childhood to the plot of Billy Elliot, a story “about a little nelly gay boy who twirled in the northeast of England” and the exceedingly masculine father who dared to love him. Bennett, in fact, traces his identity as a designer to the day in 1974 when his father, Jim, a former military pilot, brought home The Golden Hands Encyclopedia of Crafts. Jim Bennett then spent the next two years sitting with his son, making macramé and knitting God’s eyes, so that sensitive little kid could explore his talent and find his confidence. In 2001, Bennett’s father wound up in a hospital bed, stricken with bone cancer. Bennett was 5,000 miles away at home in San Francisco. He told his father he’d be on the next flight, but Jim ordered him not to come. Eventually, Bennett understood why. His father had painstakingly maintained his dignity his entire life. Now “he was trying to somehow control that experience,” Bennett says. “He was designing the last granule of what he had left: his death.”
Ideo’s Paul Bennett wants to change how we think about death.
So much about death is agonizingly unknowable: When. Where. Lymphoma or lightning strike. But Bennett recognized there are still dimensions of the experience under our control. He started zeroing in on all the unspoken decisions around that inevitability: the aesthetics of hospitals, the assumptions and values that inform doctors’ and families’ decisions, the ways we grieve, the tone of funerals, the sentimentality, the fear, the schlock. The entire scaffolding our culture has built around death, purportedly to make it more bearable, suddenly felt unimaginative and desperately out of date. “All those things matter tremendously,” Bennett told me, “and they’re design opportunities.” With just a little attention, it seemed — a few metaphorical mirrors affixed to our gurneys at just the right angle — he might be able to refract some of the horror and hopelessness of death into more transcendent feelings of awe and wonder and beauty.
In 2013, bennett started sharing his ideas with the other partners at Ideo, selling them on death as an overlooked area of the culture where the firm could make an impact. He had a very unspecific, simple goal: “I don’t want death to be such a downer,” he told me. And he was undaunted by all the dourness humanity has built up around the experience over the last 200,000 years. “It’s just another design challenge,” he said. His ambition bordered on hubris, but generally felt too child-like, too obliviously joyful, to be unlikable. One time I heard him complain that death wasn’t “alive and sunny.”
Ideo realized there was a big opportunity in death. There are currently 76 million American baby boomers inching reticently in its direction. “We’re a generation that’s used to radicalizing things,” Bennett explains. Now, as many boomers watch their parents die just as Bennett had, accepting the soulless, one-size-fits-all deaths that society deals them, they seem to be rebelling one last time. Everywhere Bennett looked — New York Times opinion pieces and Frontline specials; assisted-suicide laws; the grassroots Death Café movement, where folks get together for tea and cake and talk about their mortality; a campaign in La Crosse, Wisconsin, that got 96 percent of the entire town to fill out advance directives, spelling out their wishes for end-of-life care — he saw his generation striving to make death more palatable, more expressive. And at the far extreme is the crop of phenomenally well-capitalized biotech startups working to get around the insufferable inconvenience of death altogether, either through science-fictionesque “radical life extension” treatments or by uploading your consciousness to the cloud. (These include Calico — Google’s so-called “Immortality Project” — and J. Craig Venter’s company Human Longevity, Inc. The founder of Oracle, Larry Ellison, who set up the Ellison Medical Foundation to defeat death, has explained his motivation succinctly: “Death has never made any sense to me.”) One way or another, Bennett told me, “We’re all holding hands and saying, ‘Forget that shit. Not going to happen.’”
I followed Bennett’s work over the past year — a journey that, in the end, may reveal less about the death of people than it does about the life of ideas, particularly the brand of Big Idea that distinctly Californian institutions like Ideo send careening through the culture. Right away, Bennett understood it would take years to see the sort of wholesale shift he was imagining — a generation or more. There was so much to do, he could really start anywhere. He just needed to find a few suitable clients, to locate a few fissures through which a genuinely different conversation about death could begin to flow. And because he was looking in San Francisco, in the year 2014, the first one he found was a startup building an app.
The app was called After I Go. The president and ceo of the company building it, Paul Gaffney, had founded two other startups but had spent most of his career working near the top of large corporations such as Charles Schwab, Office Depot, Staples, and aaa, primarily helping them find their footing online. He was 47, a loose and affable guy despite being excruciatingly analytic at his core. Once, when I asked Gaffney about himself, he explained that his “personal value proposition” is “establishing a vision for a new outcome particularly in consumer-related spaces enabled by the novel use of technology” — but he managed to sound human when he said it, even warm.
Gaffney described After I Go as TurboTax for death: a straightforward app that would allow people to write wills or advance directives and, in general, preemptively smooth out the many ancillary miseries that can ripple through a family when someone dies. Bank accounts, life-insurance policy numbers, user names and passwords, what night the garbage goes out — all of it could be seamlessly passed on. Whatever fear or despair people feel about death is only heightened by the fear that, because they never got around to making the necessary preparations, their death might burden the people they love. Gaffney assumed there’d be a big market for an app that eliminated that risk. “Simply providing people with that sense of organization would be a huge emotional payoff,” he said. But he was spectacularly wrong. Bouncing his ideas off potential investors, he quickly understood that no one welcomed a chance to prepare for death. It’s thankless drudgery — plus, it reminds you you’re going to die.
Gaffney realized he couldn’t just build the right tool; he also had to build the motivation to do the job in the first place. That’s what people would pay for. Suddenly, the work After I Go needed to do was no longer rational but emotional — which is to say, far outside Gaffney’s personal value proposition. (“I learned a long time ago that I’m not a good test case for how human beings respond,” he explains.) And so he hired Ideo to help.
The Convening, as everyone called the first After I Go strategy session, happened early last April, not long into Gaffney’s three-month residency at Ideo. About 25 people gathered in the large studio of the firm’s San Francisco office, arrayed on colorful armchairs and couches.
“How can death be designed?” Paul Bennett said, rising to set the tone. He explained that he’d grown up in Singapore, where it’s customary to burn intricate paper sculptures at funerals: paper televisions, paper houses, paper Cadillacs — all kinds of gorgeous extravagances that would, via their rising smoke, accompany the deceased into the beyond. As Bennett put it, “They wanted the dead person to go into the afterlife with all this awesome shit!” But Bennett’s family eventually returned to England, he went on, a place where even the joyful parts of life were muted by the gray and cold. And he was shocked by how different funerals were there, how leaden and awful. It was proof, he explained to the Convening, that how we feel about death is up to us. Then he looked at everyone and, with great earnestness, asked: “Why can’t death feel more like life?”
From there, the Convening broke into four smaller circles to think through the possibilities for After I Go. Bennett assumed the role of facilitator and secretary in his group, manically scribbling notes with a Sharpie. When one woman shared a clip on her laptop of a New Orleans jazz band marching behind a casket, Bennett told her, “I love it. I’m writing ‘jazz death.’” He scribbled jazz death on a pink Post-it and slapped it against the wall.
Paul Gaffney was seated in Bennett’s circle and explained that, like Bennett, his interest in death had been stoked by recent personal experience. His wife and her siblings were now organizing their parents’ affairs after their father had been diagnosed with dementia. It sharpened Gaffney’s understanding of just how much disarray survivors can be left to organize, and how much can get lost. Still, Gaffney confessed, while he’s filed his own important information in an orange folder at home, and periodically reminds his wife it’s there, he rarely gets around to updating it. “What’s your folder called?” Bennett asked him, Sharpie at the ready. “It’s called the Orange Folder,” Gaffney said.
From there, Bennett started posing a series of “how-might-we’s” to the group — Ideo-speak, it seemed, for questions. The first was, How might we get people to start using After I Go? Ideas started firing — “death Tupperware parties,” “will weekends” for couples in Napa, commandeering Groundhog Day as a national “Death Preparedness Day” — until someone brought the conversation back to Gaffney’s orange folder. Maybe After I Go needed to sell a physical object like that in stores, with instructions and a download code inside; it would be a kind of totem, committing you symbolically to starting the preparation process. This idea felt promising until one woman asked, “But if it’s in the consumer space, what’s the draw?”
And there was the underlying tension. In short, why would anyone buy death? Consumer culture is always aspirational: We’re lured along by desire and joy, chasing ever-receding rewards. Gaffney’s challenge seemed to be convincing consumers to step off that rapturous treadmill and think hard about the very thing it was arguably designed to distract us from. That’s why, in part, the business excited Paul Bennett: The app could help reintegrate death into our lives. It could encourage us to start making peace with the inevitability of dying and start making decisions to shape its other aspects — here and now, and not only at the last moment, like Bennett’s father had, when there are few decisions left to make. The question, really, was how to lure ordinary, preoccupied people into contemplating big, transcendent ideas like mortality, continuity, legacy. Once, religion had cleared that space in our lives. Now it was up to Ideo to whiteboard it out.
Eventually the group moved on to another exercise using a handout about Bob and Sherry Alvi, a fictional couple outside Boston. There was even a photo of the Alvis with their two daughters: They looked cornfed and chipper, grinning in front of a fireplace. Bob, the handout explained, was an After I Go user. He was also almost dead; he’d been in a car accident and was in critical condition. And so the Alvis found themselves on the cusp of one of After I Go’s Key Brand Moments — which is to say, death. The question was, How should After I Go make contact with the newly widowed Sherrys of the world?
The circle was quiet. This one was trickier. You can’t just email her, right? The consensus was no, though the idea seemed to hang there momentarily until Bennett finally concurred. (“Death feels very analog,” he explained.) Someone proposed sending Sherry a “condolence kit”: a courier could bring all of Bob’s passwords and information along with a nice bottle of wine. Then, quietly, one man asked, Why not deliver the information to Sherry in a letter, handwritten in advance by Bob?
Instantly, the circle felt electric. Bennett was vibrating; he loved it. Others chimed in, building off the idea, and Bennett began writing madly across multiple Post-its, not coming up for air. (An awkward disclosure: The person who suggested the handwritten-letter idea was me; Ideo strongly encouraged me to participate in the Convening, so I did.) Bennett kept on scribbling. When he finally turned around, a chain of Post-Its behind him read: “Selling a service → Delivering a Message → Executing A Wish → Providing Comfort.” This was the magnificent evolution that Gaffney’s company had just hurtled through in his mind. After I Go could carry back so much more than passwords and legal information from beyond; it could transmit memories, messages, love. That was the emotional payoff, the only way to entice people into filling out all those tedious, frightening forms. Bennett tapped at the word comfort. Then he circled it. “That’s our big idea,” he said. “Comfort is the product. That’s the genius of it. You sell that.”
They had started somewhere practical — living wills, checking accounts, who should cancel the gardener — and landed somewhere metaphysical: an opportunity to comfort your widow from the grave. It was break time. Gaffney and the Ideo designers got up for coffee and snacks, but Bennett stayed at the wall, writing more Post-its, shuffling and collating them, preparing a little presentation so that, when all four circles reconvened, he could unveil these insights for the group.
“We’re moving from estate planning to story building,” he said, to no one in particular. Then he sat cross-legged on the carpet and waited, twirling his Sharpie by the bent clip on its cap.
In the weeks after the Convening, Gaffney and a handful of Ideo designers got to work in a small windowless room at the southern edge of Ideo’s office. Gradually, they covered the walls in sketches, clippings, and printouts, teasing out the tone and aesthetic of the app and imagining all possible features they might build and test.
Some of the drier mock-ups included pages to help users draft a will or designate power of attorney, or offered portals into a network of vetted legal professionals who could help. But most took bigger, more inventive leaps forward, such as allowing users to curate shareable collections of “funeral inspirations” like a Pinterest page or Amazon wish list; samples were pinned with photos of blood-orange spritzers, Japanese lanterns, and succulents. (“For my sunset party, I want deviled eggs,” one read.) The team’s most mind-bending innovation was something it called After-Gifting, whereby a person could arrange to dispense preselected birthday gifts to family members for years after his or her death. Baby booties made from your favorite jacket could be delivered to a newborn child you’d never meet. The dead might also send time-delayed text messages on special occasions, or just to say hi. After I Go could even digitize your handwriting into a font so that fresh, personalized content could continue to be generated on your behalf.
In other words, After I Go wasn’t only a tool for mundane, administrative death prep anymore. It had inflated into something far bigger — even if, in this freewheeling brainstorming phase, it wasn’t always 100 percent intelligible what that was. There was also a strange shortsightedness to some of the team’s ideas. Ginning up years’ worth of texts for your widow might comfort the person who is dying, for example, but would an actual widow want to keep receiving them? (Imagine if one landed three years later while she was on a date.) Another write-up, meanwhile, explained an alternate brand concept the team had worked up called Bon Voyage. Bon Voyage was all about celebrating “our aspirational desire for richness, beauty and simplicity in this life and whatever comes next.” To illustrate that theme, designers had mocked up the Bon Voyage account of a hypothetical user named Wilfredo.
The screen caps looked like a Madewell catalog — spare and white, with old childhood photos of the deceased arranged around quotes from loved ones and floating images of his cherished possessions. It was gorgeous, but also jarring; essentially, they’d built a luxury brand for death. And yet any feeling of elitism or superficiality was also undercut, albeit a little awkwardly, by their choice of Wilfredo. “He was the best Midas muffler manager we ever had,” one testimonial read. Nearby was a photo of the canteen Wilfredo carried “while serving as a Sandinista.”
That spring, Gaffney’s original, strait-laced vision of the app began to recede into a cloud of more emotionally indulgent features and evocative marketing copy. This was fine with Gaffney, even thrilling: Investors, he found, were responding to the app in an entirely new way. (At one meeting, Gaffney says, a prominent venture capitalist interrupted his pitch and shouted, approvingly: “I want my mother’s damn frittata recipe!”) Gaffney told me, “We now have to pivot and operate exactly like any other startup would.” All he wanted was to build a product that people would use.
As executive director of San Francisco’s Zen Hospice Project, BJ Miller has helped pioneer the field of palliative care.
One afternoon at the end of April, in the middle of that pivot, Gaffney and Paul Bennett gave a short tour of the project to a man named BJ Miller.
Miller is the executive director of San Francisco’s Zen Hospice Project, which since 1987 has quietly helped pioneer the field of palliative care. Loosely defined, palliative care is an empathic approach to medicine and end-of-life care that considers the many nuanced emotional, spiritual, and physical experiences of the patient and his or her overall well-being, rather than formulaically treating a medical condition. Zen Hospice deploys a corps of more than a hundred trained volunteers into homes and at a city hospital, but its centerpiece is a tranquil six-bedroom Victorian home in Hayes Valley known as the Guest House.
The Guest House has an extraordinary feel to it, deeply spiritual without being overbearing or mushy. Residents are invited to meditate with staff and often gather in the kitchen to casually enjoy the rituals and smells of cooking, even if they’re unable to eat. Miller told me he recently supported the decision of a woman at the Guest House with terminal cancer to start smoking again — as he explained it, it was worth it for her to feel and use the very lungs she was losing; it deepened her experience of letting go. In short, Miller explained, Zen Hospice’s power comes from recognizing that “dying is a human act, not just a medical one.”
Miller had been introduced to Ideo about a year earlier, and quickly achieved a kind of guru status among many at the firm. (“He came in and everyone instantly fell in love with him,” one Ideo staffer told me.) He is 44 and preternaturally poised, the sort of person who, after speaking about death and dying on a public-radio call-in show last year, not only read the comments that poured onto the show’s site later, but responded, compassionately, to each one. In person he is blessed with a blazing magnetism that can’t be overstated — a recent acquaintance described him to me, only half jokingly, as “the most magnificent human in the world” — and could pass easily as a Hollywood leading man, with tousled, slightly silvering dark hair and a dimpled grin. He is also missing half of his left arm and has two prosthetic legs.
In 1990, while an undergraduate at Princeton, Miller was out late with some friends and decided, for the fun of it, to climb atop an electric train car. The electrical current arced from a piece of equipment into his wristwatch, sending 11,000 volts through his arm and out his feet, nearly killing him. (Miller still wears the watch occasionally; it works.)
His recovery was long and taxing, but the injury intensified his intellectual curiosity about death and suffering. When Miller returned to school, he began studying art history, fascinated by how artists make sense of the darkness and pain of the human experience. Then, after playing volleyball in the Paralympic Games and founding a tea company, he went to medical school and eventually found his calling in palliative care, especially for terminal patients. (He still practices medicine part-time at ucsf.) Miller felt he was uniquely qualified. “A lot of physicians will work their whole life on a disease that they’ll never have,” he says. Miller, at least, had come as close to dying as anyone could
Paul Bennett was drawn to Miller immediately. Miller was a physician, intimately familiar with how bodies fail and shut down, but he’d also spent the two decades since his accident attuning himself to the same aesthetic dimensions and deficiencies of the dying process that Bennett was now obsessed with. That is, Miller had a profound head start when it came to redesigning death, and he and Bennett quickly fell into a wide-ranging dialogue. In an email to Bennett early last year, for example, Miller wrote: “I’d say that humans have thrived by turning every need — every vulnerability — into something in its own right.” Shelter becomes architecture, he noted. Reproduction gets wrapped in romance and love. And “think of all the cultural significance and artistry and labor that goes into [eating].” Miller wanted to bring that same creative power and meaning-making to death, but he had trouble finding a sounding board for those ideas in the medical community. He was as grateful to find Bennett as Bennett was to find him
Last February, Bennett invited Miller to an orientation for a small team of Ideo designers on the work he was hoping to undertake. Because it felt wrong to talk about death in a conference room, some junior designers took it upon themselves to build a Death Yurt at the center of Ideo’s studio — a black, candlelit enclosure reachable only by crawling through a long, dark tunnel. (“It was like a sweat lodge,” Bennett says.) As homework, Bennett had asked everyone to design their own funeral, and he kicked off the discussion. He explained he’s always been terrified by the knowledge that he’ll die alone. (Bennett’s partner is 15 years older than he is, and they have no children.) But lately he had been reshaping the image in his mind. If he was going to die alone, he said, he’d like to do it outside, in Iceland, under the quivering brilliance of the Northern Lights.
Huddled in the Death Yurt, Miller felt simultaneously invigorated and dubious. On the one hand, this was precisely the sort of more joyous conversation he wanted to encourage people to have long in advance of their own deaths. (“I felt like I was watching Paul be converted to the possibilities,” he says.) Miller had seen firsthand that, because we spend our entire lives avoiding thinking about death, when it finally comes into view, there’s a thicket of panic, denial, or disbelief to cut through before people can focus, more mindfully, on the experience and begin to make decisions to improve their last days. Then, of course, you still have to reconcile those hopes with the exigencies of the health care system, which can be torturously inflexible. When you sit with a dying person, Miller says, “Time is always in the room. … At best, you’re able to salvage some peace or comfort for a moment.”
And yet Miller also knew that these more imaginative conversations about death needed to be channeled in just the right way. In the Death Yurt, Bennett and his team seemed to be caught up in what Miller recognized as the “endocrine rush” of finally facing death head-on. That exuberance, while helpful, needs to be moved past; otherwise, it can wind up derailing more practical conversations, or alienating people on aesthetic or socioeconomic grounds. For one thing, Miller later told me, “Paul’s Iceland idea presupposes you can time all that” — that you could fly him over and wheel him out at just the right moment, then cue the Lights. “You don’t want to shit on somebody’s beautiful idea,” Miller said, but “if you start talking about dying well or dying a ‘good death,’ then you also set people up to fail at death
Miller seemed to bring that same sobering perspective to his tour of the After I Go workshop. At one point, the lead Ideo designer on the project, Denise Burchell, was talking him through a potential After-Gifting feature the team would eventually call Remembrance Maps: walking tours of sentimental locations, left to loved ones either as actual maps or location-based software. For example, your deceased grandfather could ping you to suggest you go sit on a particular park bench where he and your grandmother used to enjoy the view, 300 yards from where you’re standing. The power of features like this, Burchell explained, was that you wouldn’t be showering your loved ones with “generic memories” but “personally relevant ones.” “These,” she said, “are your memories.”
“Can I ask you a question?” Miller interjected politely. “The quest for immortality in general is very problematic,” he began. He seemed to be feeling the same mix of hopefulness and ambivalence he’d experienced in the Death Yurt. He wanted to know if they’d thought through the implications of catering to what, essentially, is our narcissism. Fundamentally, Miller’s work is about helping people let go of that fierce attachment to the self — the urge to hang on to it at all costs. Was Gaffney’s team finding they could tap into that impulse in a purely positive way? “Is there something good in that compulsion?” he asked.
Burchell seemed taken aback by the question. They hadn’t launched the app yet, not even in beta. “At this point,” she said, “we just have hunches.”
By the end of the summer, After I Go was effectively dead.
There had been remarkable progress before then, however. Gaffney’s vision of the app had sharpened. What they were building, he realized, was a “private social network,” a lockbox where families could collaboratively collect and curate their memories. It was as much a place for living people as for dead ones. Just as sites like Ancestry.com allowed people to discover the identities of their ancestors, he told me, uploading material to Gaffney’s product would allow people to one day discover the stories of their ancestors. All the functionality of the app — they had renamed it Keeps by this point — started to snap into place around that insight; it felt full of promise. But even as Keeps started humming along conceptually, Gaffney’s belief in it was crumbling.
For one thing, there was uncertainty about how Keeps could ever be monetized. And it was proving impossible to hire the prototypical gang of slavish, single-minded twenty-something coders to work for the company. (Young people, it turned out, weren’t enthusiastic about building a digital lockbox for baby boomers to stuff their memories into; unlike apps that called you a car or delivered food to your door at 2 a.m., its mission was totally unrelatable.) Meanwhile, Gaffney was realizing it could take another year of development, maybe more, to build this new, sprawling incarnation of the app he was imagining — and that he would need to raise the money to fund that process. He told me, “I started to feel like I’d probably feel miserable trying to make that work, rather than feeling confident that we would make it work.”
Then, just as all these unnerving roadblocks came into view, Gaffney was offered a job as senior vice president of information technology at Home Depot in Atlanta. He took it, putting Keeps on hold indefinitely. And by September, there he was: smiling on Home Depot’s senior-leadership web page, wearing one of those orange aprons over his dress shirt.
“You can imagine how disappointed people here are,” one Ideo staffer told me when I first heard the news. Paul Bennett had been imagining a massive cultural shift and had invested at least a share of that ambition in Gaffney’s app. But for Gaffney, closing down Keeps had been a simple, unemotional calculation: He’d sized up the obstacles, decided it wasn’t worth it, and walked away. He wasn’t on a quest to confront some metaphysical dilemma, after all; he was building a consumer product in Silicon Valley. Keeps was just a startup, and a seed-stage one at that. Startups collapse every day.
From a business standpoint, Keeps had arguably done everything right. The app kept pivoting, as apps must. It feverishly chased what it thought we wanted most, until satisfying those desires seemed too difficult, at which point it suddenly pivoted into oblivion.
And that trajectory felt familiar. It’s hard for any of us to face down what’s difficult, frightening, or fragile in life, no matter how earnestly we may want to internalize and reimagine it. Gradually, we get distracted; we drift away from what we suspect might really matter.
Bennett hoped the app could lead us out of that problem. And it might have. It did, however, wind up illustrating the problem exquisitely.
Bennett moved on quickly. He was proud of the work Ideo did for Paul Gaffney and harbored no hard feelings. “Paul had other things he wanted to do,” Bennett told me. “The lesson was, you can’t just go into death lightly.”
That fall and winter, Bennett continued to proselytize about death and design. He talked to Ideo’s health care clients. He talked to philanthropists. He spoke at the launch event for a “healthtech incubator” in Chicago, for a crowd of 200 people. He talked to a “mortician in Los Angeles who wants to do groovy, Six Feet Under rock ’n’ roll funerals” and to a visual artist who’d designed a bodysuit made of fungi as an alternative means of burial. (“You become this organic sculpture at the end!” Bennett explained.) For the most part, these conversations were casual, but in January Bennett told me his goal for 2015 was to convert several of them into actual business propositions. Already he’d landed what might have been his ideal client all along: BJ Miller and the Zen Hospice Project.
Zen Hospice had hired Ideo for the better part of a year to work on several ambitious fronts at once. Miller told me Ideo would first help them “better articulate ourselves to ourselves” — zero in on what makes Zen Hospice’s philosophy and style of care valuable, and enhance it even further. A team of designers was already prototyping ways to improve the experience of residents and staff at Zen Hospice, including dreaming up new, more imaginative physical spaces designed specifically for dying. Then Ideo would help Zen Hospice to step into the public sphere as a potential model for reforming end-of-life care. Zen Hospice wanted to enlarge the public’s appreciation for how much more meaningful death could be. It wanted to build a coalition of similarly minded palliative-care workers and organizations, lobby for more enlightened health care policies, and get insurers to cover care at facilities like its Guest House, laying the economic groundwork for more of them to arise. “I think,” Miller told me modestly, “we’re interested in gestating something like a movement.”
By mid-January, the company had dispatched two researchers to the Guest House, where they’d spend two weeks observing and interviewing staff and volunteers and speaking with families of former residents. Zen Hospice was a small, bootstrapping organization that had never had the luxury of stepping back and codifying its organizational identity, much less a strategy for explaining its mission to outsiders. And so the two women from Ideo — an anthropologist and a “business designer” — were working up an ethnography of the place, allowing Ideo to key into the essence of Zen Hospice and then build out its brand. Dana Cho, an Ideo partner who oversaw the research, told me it’s always a challenge to hew through the stale vernacular that builds up inside any field and get people to loosen up and truly reflect on the work they do every day. And so the researchers came armed with props. In one exercise, Guest House staffers were shown pictures of celebrities — Julia Roberts, Oprah, Dame Judi Dench — and asked to describe what qualities Zen Hospice shared with each.
Ideo, meanwhile, had encouraged Miller to reach out to ted, and he was soon invited to speak on the final day of the ted conference in Vancouver in March. This was a tremendous opportunity: Bennett and Miller both sensed that the scattered but intensifying conversation about death in the culture was searching for some center of gravity. To become a genuine movement, it needed some stake to wrap around and grow — an ambassador like Miller, or an organization like Zen Hospice, or even an entire community, like San Francisco. “San Francisco feels like a very logical place to me for death to be normed,” Bennett told me. “It’s a place where radicalism was born. Why can’t the radicalism of death be something we help build here?” It’s a clumsy analogy, maybe, but it was easy to imagine Zen Hospice emerging as a kind of Chez Panisse of death, and Miller as death’s Alice Waters.
The firm’s partnership with Paul Gaffney had fizzled because Gaffney’s startup was a business with no ideological center. He wasn’t married to any particular idea; as Gaffney once told me, he was only “married to delivering real value.” Miller, on the other hand, was delivering compassion. His whole life seemed to cling to a certain hard-to-articulate ideal — a determination since his accident, as he put it, to live a full life and stay rooted in real things. Even as he opened his organization to Ideo’s efforts, in fact, he felt conflicted about being cast as a spokesman. He still considered himself a relative newcomer to palliative care and was too introspective, and too humble, to crave any celebrity. In short, what made him reticent was his integrity. It was also what convinced Bennett this could work
An encouraging push and pull seemed to have developed between the two men. A year earlier, Bennett’s crusade against death seemed to be motivated entirely by his frustration with the way his father died. But over time it was evolving into something more nuanced, inclusive, and humane. When I asked what Bennett hoped to accomplish with Zen Hospice, he told me, simply: “Best-case scenario is that more people in more places talk about death in a design-rich way.” Miller, meanwhile, confessed he’d previously dismissed branding as “some kind of trickery,” but that since starting work with Ideo, he had begun “to appreciate it as its own craft” — a clarifying process, and a tool for doing good. He was fine-tuning his ted talk, committing himself to his place on that stage.
In mid-February, Miller and a few of his board members arrived at Ideo’s San Francisco office for the same species of strategy session that Bennett had held to launch the work with After I Go. The tone of this meeting was much less rambunctious, though, and it was held in a smaller, more minimalist room around a loosely arranged circle of bare metal chairs. (I noticed no one used the word convening, either; everyone just called it a workshop.) Wooden boxes of Sharpies and brightly colored Post-its waited on a table at the back of the room. This time, it felt like something might stick
Is it better to declutter and move to something smaller long before the inevitable happens?
By Rebecca Huntley
Four years ago, a dear friend of the family, ‘Jane’, died of bowel cancer.
Jane had helped me around the house and looked after my first daughter, from the time she was a baby up until she went to school. We kept in touch over the years, and soon after my twins were born, she got the diagnosis.
The last time I saw her she was frail and could barely walk.
Sitting on the couch together in her daughter’s apartment, she took my hand and said, “Everything I have left I am wearing. I’ve got rid of the lot. I don’t want the kids to have to mess around with all my things when I’m gone”.
I was so impressed, not just by Jane’s organisation and foresight (which I knew all about), but by her generosity.
Leaving very few possessions behind was one of the greatest parting gifts she could give to her children.
Since then I’ve been thinking a lot about the things we leave behind when we die.
By ‘things’, I don’t mean the intangibles like the life lessons, memories and enduring love that sustain family and friends. Or the legacy of work done in our professional lives or the unpaid work in the community.
But the actual things. Candlesticks. Sporting trophies. Mugs.
You know, the kind of items that we occasionally wonder might be worth some mind-boggling sum if we ever managed to take them to an Antiques Roadshow. The millions, maybe billions of items, continuously gathering dust in the houses and apartments across the nation.
Of course, it has something to do with my stage of life.
As I head towards 50, I see many of my friends going through the emotionally draining and physically exhausting process of helping a sick or widowed parent pack up and sell a family home.
Friends tell me about the days and nights spent working through boxes and boxes of candlesticks, sporting trophies and mugs with an ailing or grieving parent.
And spending days working out what goes in the bin, gets donated to charity, given away or taken to the next dwelling, which is by necessity a half or a quarter of the size of the home they’re leaving.
“No candlesticks, just memories.”
It’s also a story echoed in the research I do with Australians.
And, on the whole, a story mostly told by daughters and granddaughters. In fact, I’ve found it’s largely these women responsible for this forced decluttering and managing of parents’ affairs at this time of life.
It takes its toll on these women, not just physically and emotionally, but even financially as they have to pull back from work to play this caring role.
It often comes at a time when the daughters are at the tail end of caring for their own children. A time when they thought they might have a chance to increase their paid work, or spend time and energy on personal goals.
Then suddenly, these women have responsibilities to parents almost as demanding as those associated with small children — with all the uncertainty and disruption, and far less of the joy that comes with looking after little ones.
In my role as a social researcher, I’ve met mothers trying to support a child through a final year of school — at the same time as helping a widowed parent find retirement living and pack up and sell their family home.
Death-induced decluttering. At the very moment you should be taking time and energy to grieve, you are knee-deep in cardboard boxes and vintage knick-knacks.
Decluttering is a global trend in affluent countries like Australia, led by a slew of ‘less is more’ advocates like author Marie Kondo and Oprah’s organising guru, Peter Walsh.
There’s Swedish death cleaning, döstädning, which is the practice of mindfully clearing out one’s own possessions during later years.
Not to mention the influential effects of the ABC’s War on Waste and how it’s challenging all of us to be more aware of what we buy and what we toss.
Death cleaning helps those family and friends we leave behind, but it’s emotionally draining and physically exhausting.
They’re all terrific developments. Although I worry that these messages sometimes get framed in terms of ‘good taste’ and ‘shame’.
Is it easier for some of us to declutter than it is for others? Is there a ‘clutter divide’ where the more affluent you are, the easier it is to live with less?
A single wealthy man who can afford a sparsely and elegantly decorated apartment in the centre of the city can certainly make do with fewer things, compared to a larger family living in the suburbs without social and cultural amenities within walking distance.
That said, visiting thousands of houses all over Australia for my work has made me realise many of us are living in homes full of things we find hard to get rid of — that is, until something forces us to.
Downsizing in a crisis (death, financial difficulty, illness) is doubly distressing.
I wonder whether it makes better sense to chuck the stuff and move to something smaller long before the inevitable happens.
If I am lucky enough to die of old age, I know what I want to leave behind. Saying goodbye to Jane on that couch confirmed it for me.
I will shuffle off this mortal coil with nothing left but a silk nightie, some precious paintings on the walls around me, and a handful of photos in my bony hands.
The room is dim and hushed. On the floor before me lies a shaggy bear of a dog. His name is Shep, and he’s some combination of Great Pyrenees and probably German shepherd. His owners, Anne and Rich, adopted him to guard their dairy goats from coyotes, but Shep wasn’t very good at his job and instead became a much loved house dog. I know this because I’ve been taking care of him, as his veterinarian, for his entire life. Now, as he is stretched out before me on the floor, I can see the effects of the cancer that is slowly ending his life.
Shep has osteosarcoma, an aggressive and destructive bone cancer. It starts somewhere in a long bone of the body, silently eating away at the leg until there is nothing left. The leg gives out in a painful and sudden fracture. The cancer then progresses slowly, eventually invading the lungs. Once the cancer is in the lungs, there is nothing left to be done. It is only a matter of days to weeks.
We discovered the cancer when Shep broke his leg. I had a long heart-to-heart with Anne and Rich. The typical treatment is amputation followed by chemotherapy. With that treatment, a good quality of life can be obtained for up to a year or more. There are no guarantees, of course—cancer will do what it wants. Anne and Rich spent two days deliberating the pros and cons, but since Shep was otherwise happy and healthy, they decided to amputate and pursue chemotherapy. He did great as a tripod. Often you had to look twice to notice that he was missing a leg.
That was nine months ago. Now, the chemo has stopped working, and Shep’s lungs are filled with cancer. As he lays on the floor before me, his breathing is labored. Thin, watery blood leaks from his nostrils, and he coughs occasionally. His eyes are dull, no longer the bright, shiny brown that I remember. He doesn’t enthusiastically investigate my hand for treats. His tail doesn’t thump when I softly murmur, “Shep’s a good boy.” The dog I knew isn’t here any longer. His body is a shell.
Anne and Rich are huddled on either side of him, weeping quietly. Anne runs his shaggy fur through her fingers over and over.
“It won’t hurt, right, Dr. Ashe?” she asks me again.
I shake my head gently. “No. I’m going to give him propofol to make him very sleepy, and then I am going to give him the blue injection. It will slowly stop his heart and breathing. He will drift off to sleep and then he will die. He will not feel anything,” I say. I show her the syringes again, even though we’ve already been over this. I use the word die because ambiguity is never good in these situations.
Anne takes a deep breath, looks at Rich, and then nods. It is time.
I place the Shep’s great paw in my lap, check the catheter, and slowly inject propofol. Shep’s breathing deepens, his eyes grow glassy, and his head falls to one side. I give the second injection. His breathing slows. Slows. Slows. And then it stops. Anne gives a strangled cry and lays across his still form. Rich is stoic but tears track slowly down his face. Both are focused on Shep’s body, so they miss what I see—the final gift my patients often give me. As the drugs take hold, I swear I glimpse relief in his brown eyes.
When I was a kid, I remember hearing my parents having whispered conversations about what I interpreted as “youth in Asia.” I’d be half dozing in the backseat of our car, driving through the night, the radio playing, and I would hear their low voices, the urgency with which they discussed it. At the time, I was uncertain why they were so concerned about the teen population of Japan. What did that have to do with death squads and socialized medicine? It wasn’t until years later that I realized what they were actually discussing—not “youth in Asia” but euthanasia. And it wasn’t until I became a veterinarian that I intimately understood euthanasia, the easy death.
Euthanasia was a hotly debated topic for those of us who grew up in the era of Dr. Jack Kevorkian. When I was 19, Kevorkian was convicted on charges of second-degree murder for assisting in the euthanasia of Thomas Youk. Youk was in the end stages of ALS, a disease that ravages the body but leaves the mind intact.
I paid little attention to these debates back then. I was bound for college, with the world unfurling before me. But these questions came back to haunt me almost 10 years later when I started my career as an emergency veterinarian. For what do veterinarians do besides vaccinate pets and treat diseases? We ease suffering. We help our animal companions to the threshold of death, and then we help them through that final, mysterious door. We euthanize sometimes on a daily basis. We do it for reasons of behavior, illness, injury.
And as we do it, we hold the hands of distraught owners and help them make that last painful decision. We offer words of comfort and listen to sacred stories. And we meet each pet’s eyes in those last moments, and what we see again and again is not fear but relief. Relaxation. The end of suffering has come at last. I have seen it firsthand, time and time again. The wordless thank you, as a beloved pet slips into whatever awaits us in the next life. The light dims and then is extinguished. As animal physicians, we are not afraid to acknowledge that death comes for us all and that we possess the ability to ease its final agonies.
Even in death, Americans just can’t stop themselves from destroying the planet, according to new research.
Right now there are around 22,500 active cemeteries in the United States. These sanitized spaces, with bunches of flowers lain among neat rows of gravestones on manicured lawns, are so closely associated with the American idea of mourning that it’s difficult to imagine an alternative.
Yet the practice is deeply unsustainable. Every year, in laying their dead to rest, Americans bury approximately 73,000 kilometers of hardwood boards, 58,500 tons of steel, 1.5 million tons of concrete, and 3.1 million liters of formaldehyde. A typical four-hectare cemetery contains enough wood to construct 40 homes and sufficient volumes of embalming fluid to fill a backyard swimming pool. As the Baby Boomers start to die, these environmental impacts are only going to grow.
“People hate to think about it. They think, ‘I’m going to be embalmed, put in a vault, and have a nice, dry, quiet existence for my body,’ but that’s a total farce,” says Chris Coutts, an associate professor in the Department of Urban and Regional Planning at Florida State University. “The bodies quickly start to rot, and those fluids, if they’re in the body, find a way out of the vault and into the soil, and they can create a plume. It’s a concern if it migrates into water tables. The whole point of embalming fluid is that it doesn’t degrade, so it’s going to be around a long time.”
Coutts is the lead author of a new paper examining the benefits of a greener alternative to the traditional rituals of death: natural burial. While higher-density family vaults can reduce your environmental footprint compared to an individual burial, it’s still a high-impact way of shuffling off your mortal coil. Even cremation, which has doubled in popularity since 2000, leaves an environmental smudge on the Earth, thanks to its high energy consumption and the ensuing air pollution.
Increasingly, Coutts et al. have found, people are rejecting the lawn-park cemetery model, and instead choosing to commit their bodies to a wilder resting place. In most cases, this means eschewing traditional American funerary rites altogether and burying the body without chemicals in a biodegradable casket or a simple shroud. At its best, natural burial allows your death to leave almost no physical damage on the natural world, while helping to protect and conserve threatened landscapes for those still living.
One example is the 142-hectare Glendale Memorial Nature Preserve in Florida, a family farm located in an area full of endangered native longleaf pine and wiregrass. The plan for the cemetery called for 80 percent of the land to be restored and conserved as natural habitat, with around 28 hectares set aside for natural burials. Add-on items include coffins constructed from old bookshelves, while the conserved habitat is also available for recreational activities including hiking and camping. Telling ghost stories remains optional.
John and Bill Wilkerson, the brothers who run the business, say that the income they’ve generated from the burials has allowed them to resist the financial pressure to sell the land to developers—a proposition that was adamantly opposed by their late parents.
The lawn-park cemetery in America might feel like an inescapable ritual, but the idea is relatively recent, arising in the 19th century, as urban elites grew increasingly affluent. Rural cemeteries like Mount Auburn in Boston or Laurel Hill in Philadelphia were not only useful for memorializing the supposed importance of the deceased bourgeoisie, but also for providing their surviving relatives a pleasant getaway from increasingly crowded cities.
The practice of embalming grew popular around the time of the American Civil War, Coutts adds. “They needed to preserve and ship the bodies back to wherever they were going to be buried, and embalming became prevalent. It’s the common expected practice, but it’s really just people going through the motions: It’s what we’ve always done, it’s what we continue to do, but that’s changing,” he says.
This resource-intensive method of burial is far from universal across the globe. Muslim communities practice natural burial as a “basic religious obligation,” according to Coutts and his fellow authors, while in countries such as Australia, grave sites can be reused for new inhabitants after a certain amount of time has elapsed. In the Peruvian Amazon, before the arrival of Christian missionaries, bodies were lain among the buttress roots of large trees. Some Tibetans practice sky burials, placing the corpse on a mountain and allowing it to decompose gradually.
The first natural burial site in the U.S. was established in 1998 in South Carolina. There are now 162 natural-burial providers in the U.S., of which 99 are hybrid cemeteries, offering both natural and traditional burial. A further 54 offer exclusively natural burial, while nine are active conservation burial sites.
Yet America’s lucrative death-care industry is fighting back, determined to protect a billion-dollar market by perpetuating the idea that a resource-intensive funeral is the only guarantor of lasting peace. Indeed, hybrid burial sites are mostly a way for the sector to cash in on the growing popularity of natural burial, a form of greenwashing that offers little in the way of concrete benefits, says Joe Sehee, who founded the Green Burial Council, which certifies natural burial sites, in 2005.
“There were people who just didn’t like the idea [of natural burial],” Sehee says, “people within the industry, particularly people who liked the merchandise-based model of death care: chemical, casket, and vault companies.”
Perhaps more sinister than this greenwashing are the attempts by the funeral industry to lobby for new regulations that will protect its economic position. There are very few federal laws around the handling of the dead, with states and local governments generally left in control. Around half of U.S. states regulate the amount of time that a body can remain un-embalmed, yet no states require a body to be buried in a coffin. Only a handful of states forbid bodies being buried outside of established cemeteries.
This loose legal framework bodes well for natural burial, and badly for Big Funeral. Correspondingly, the mainstream funeral industry has lobbied state governments to pass legislation protecting its share of the market, such as mandating embalming, only permitting burial in established cemeteries, and requiring the involvement of a licensed funeral director to perform tasks that could ordinarily have been performed by the next-of-kin. Restricting citizens’ freedom to access natural burial is bad for the environment, and could deter those who might have chosen this wilder option because it was cheaper than a traditional plot.
Coutts himself, after years of studying the benefits of a natural burial, sounds almost excited by the contribution he will be able to make to conservation from beyond the grave. “I’ve often just dreamed about walking out into the desert with a bottle of water and just sitting under a tree and waiting for it to come,” he says. “But that would be a luxury and it’s probably not feasible. I have it in my will that I want my body to be buried naturally in a conservation burial ground.”
