Category: Death Meditation

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Death, Redesigned

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

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Life Is Short.

That’s the Point.

Our mortality is not something to be overcome. It is integral to our humanity.

By Allison Arieff

Consider this fact of modern life: Nearly all of the technological products that we buy and use are designed with planned obsolescence in mind. They are built specifically to fail after a relatively short period — one year, two, maybe five. If you doubt that, think about how often you have to replace your smartphone. Gadgets are designed to die.

The irony, however, is that the same Silicon Valley culture that produces these gadgets seems to be obsessed with living forever.

Today’s “life extension” movement includes venture capitalists like the tech billionaire Peter Thiel pouring money into anti-aging and life extension start-ups. (While the rumor that Mr. Thiel receives regular blood transfusions from 18-year olds turned out to be false, there is, of course, an actual company — Ambrosia Plasma — that provides young plasma infusions for $8,000 a liter.) And Google launched the biotech company Calico to increase its “understanding of the biology that controls lifespan,” and bolstered that goal by conducting research on the long-living naked mole rat, a species that shows little to no signs of aging.

In recent years, the lure of disrupting death has become a hot industry. Paul Bennett, a partner at the design consultancy IDEO, was among the first to tap into it. A profile in The California Sunday Magazine in 2015 described an epiphany he had: “ ‘Oh,’ he told himself. ‘You need to redesign death.’ ” Since then, an entire new market has flourished. Death as a conduit for innovation. Death as a participatory exhibition. Death as the organizing principle for networking dinners. Death as an app.

There are now people who refer to themselves as “longevity entrepreneurs,” who see death not as a problem but rather as something to be eliminated. Instead of pursuing a good death, why die at all? Beneath the surface of this quest for eternal life seems to be an unwillingness on the part of its proponents to imagine the world without themselves in it.

In a very fundamental way, this tendency is inhuman.

In her new book, “Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer,” Barbara Ehrenreich writes: “You can think of death bitterly or with resignation, as a tragic interruption of your life, and take every possible measure to postpone it. Or, more realistically, you can think of life as an interruption of an eternity of personal nonexistence, and seize it as a brief opportunity to observe and interact with the living, ever-surprising world around us.”

I was taken by Ms. Ehrenreich’s formulation, this notion that our experience of life, though unique to us, is just part of a broader continuum. Our time here is but a blip, and when we leave, the great world continues to spin. As such, the appreciation of our own lives has much to do with the ever-increasing awareness of its relative brevity. It is this — an awareness and acceptance of our own mortality — that makes us human. And it is the impetus, I’d argue, for living our lives to the fullest.

There was a brief period in my own life — less than two years — in which I got married, lost my mother to cancer, had a miscarriage, bought a house and gave birth to a child. Experiencing all this in so short a time span made me feel almost too human. That barrage of ends and beginnings left me intensely aware of the fragility of life as well as enthralled by the glorious intensity of it: I lost and simultaneously gained so much. Today this awareness of the temporal nature of it all leaves me determined to seize, observe and interact with the days that remain. It is the knowledge of how quickly, sometimes tragically, things can change or disappear that fuels my urgency to be in the present.

As a teenager I remember lamenting how horrible and unfair life was, only to have my parents respond that one couldn’t appreciate the good without experiencing the bad. Back then, hearing that was annoying; as an adult, it remains annoying, but it is also completely true.

It is rare for us to give much thought to the challenges we would face if there were no end to our time on earth. Would the condition of our bodies affect the condition of our minds? Would everyone live forever, or just those with the means to afford it? Could you opt out of eternal life? Would inequality dissolve, or would it become even more of an intractable problem? Would we still gain the empathy, wisdom and insight that can come with age?

Technological breakthroughs can be life-changing. But I believe that our humanity — our humanness — is inextricably intertwined with the fact of our mortality. And no scientific fountain of youth can ever cause that to change.

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Travel Guide to the End of Life

An interview with Sallie Tisdale, death and dying educator

Sallie Tisdale

By Sallie Tisdale

“I have never died, so this entire book is a fool’s advice,” writes Sallie Tisdale at the start of her latest work, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying. However, there’s wisdom in knowing that you don’t know it all, and Tisdale’s enchanting prose searches as often as it instructs. In addition to being a writer, Tisdale is a Buddhist practitioner and teacher, a nurse, and an end-of-life educator who leads workshops on preparing for death; her depth of experience at the side of the dying is apparent throughout.

In these essays, Tisdale tells of the death of her Zen teacher, her mother, her close friend Carol, and others she has known, and asks questions many of us avoid: How do we define death? How do we manage physical pain or grief? Does our dignity depend on our health? This book, Tisdale writes, is meant to help you prepare for your own death and the deaths of those closest to you. It’s a travel guide to the end of life, a map of the territory, not a book of spiritual guidance. At its close, Tisdale even offers four appendixes for those seeking advice on the practicalities of death preparation. “My Death Plan,” “Advance Directives,” “Organ and Tissue Donation,” and “Assisted Death” prompt readers to consider their preferences for pain management, rituals and services, burial place, funerary rights, and more.

“If you die once, you will never have to die again,” Tisdale told Tricycle in February, recalling a teaching she heard when she was a young Zen student. At the time, she found the sentence perplexing. But as her practice progressed, the deep sense of release that she experienced—a “falling away of body and mind”—encouraged her to continue, and eventually led to the understanding that one can meet death as wholly as one aims to meet life. In the interview that follows, she tells Tricycle how she cultivated familiarity with her own mind while tending to her patients and loved ones, and why considering our own death just might make us happier.
—Marie Scarles, Associate Editor

Why did you feel compelled to write this book? I’ve been leading workshops and small groups about preparing for death at my Zen center for about a decade. I started to hear that people in other groups wanted to see the syllabus and material I was using. So I thought I could develop it into something that would be comprehensive and useful for people.

Preparing oneself to die is an inescapable challenge. It is also part and parcel of religious practice. I’m struck by the fact that as Buddhists we know this and yet it doesn’t come up in conversation all that often. We self-censor. We think, Oh, if you were a really good Buddhist you wouldn’t have those feelings, you’d wouldn’t have that fear, you wouldn’t be confused, you wouldn’t be struggling. You’d have it all figured out. This is very damaging to us. Our practice is about authenticity, rigorous self-examination, and honesty. If we’re honest, we’re going to admit that none of us is quite ready to die.

In the book, you write that when we’re speaking with someone who is dying, we need to avoid telling them what they should do or how they should feel. Are these “shoulds” another form of censorship? I’m going through this with a friend right now. I was with him last night, and one of the things that he’s really struggling with is his deep fear of self-extinction. I have to bite my tongue not to try to reassure him, not to try to take the fear away from him, but to let him explore it and feel it. It’s his, and his perspective on it is very different from mine. It’s not my life.

It’s so easy for us to pop in and say, “You should be feeling this,” or “Of course, you want me to do and say this.” But when we do, we’re missing the fact that nothing is more intimately the result of your whole life than how you meet death. We have to notice our urge to put our own veneer on someone else’s experience.

I’m sure I’m less uncertain and awkward than most of the people in the room, but I am still awkward and uncertain at times at that bedside: I’m not sure how to answer a question, or I’m looking for comfort with the silence, knowing there’s nothing to be done about certain things. I’m still just trying to meet the experience all the time, and stuff comes up for me, of course. It does for all of us. But it’s really myself that I’m encountering, the ways I think it should be. This is the way I want it to be for me. That fundamental egotism is still there, even at somebody else’s deathbed. You have to continually notice this fundamental egoism.

I imagine this process of getting to know your own experience—as well your nursing work—has helped you navigate encounters with death. Of course, every death is different. Yet there are remarkable similarities. We’re not that different from each other. You can really predict and expect certain things with the deaths from chronic illness. Even with sudden deaths, once the moment of death is reached, it’s the same moment. It’s something you recognize if you’ve seen it before. It’s like that line in the Theravada version of the Mahapari-nirvana Sutra where Ananda says that the hair on the back of his neck stood up when the Buddha died. There’s something we recognize there that goes really deep.

I also want to say that I had a lot of fun writing this book. I feel a lot of joy in the face of the preciousness of life—a kind of silly joy at times. Not only are there these rituals of crying and role change that every culture has around the deathbed, there’s also a deep worldwide culture of laughing at death, making fun of it, joking about it. I think it’s because it puts us face-to-face with the deep love that we feel for each other.

This reminds me of a 2007 study you mention in the book that says thinking about our death makes us happier. Yes, but they explained this happiness in a different way. They’re talking about terror management theory—the psychological belief that it is fundamental to human nature to be terrified of death and that you can’t escape the terror. Terror management theory states that you can’t not be afraid of death. I don’t believe that. I think we are all afraid of it until we know it. When we really know it, that’s what spares us from the terror. Terror management theory says that this is part of being human, and that we do a tremendous number of things to distract and protect ourselves from this fear. I think we’re healthier than that. In the Buddhist sense, we have the potential to be as healthy and whole around this as around everything else in our life.

An awareness of death comes and goes. We’re hyperaware of it at one moment, maybe when someone close to us is dying, and then it fades away again. How do we get to know death, or maintain this sense of awareness? I’m a Zen practitioner, so the language I’d use here is “the falling away of body and mind.” If we become familiar with what it means to arise and fall in every moment, if we become familiar with the emptiness of the purported self and we come to accept ourselves as a loosely cohering set of compounded things, we don’t believe in the self all the time. Of course, we constantly forget and remember this again, but over time we do become more familiar with ourselves as impermanent, and eventually we come to see the glory of that. The grace of impermanence is that we belong to everything, that we are not separated from anything, that we are not isolated. As I say in the book, we may be waves on an ocean, but we are waves that know we are waves. That’s what I mean by really getting to know death. It’s not just spending time at a bedside, being with people who are facing death, getting to know your reactions to it. In a practical sense, this can be very helpful. But the most effective thing in getting to know death isn’t being with dying people, but sensing myself as being a continually dying person.

There’s a saying I’ve been told as long as I’ve been practicing: “If you die once, you will never have to die again.” I heard that when I was very young, and I didn’t know what it meant, but I do now. When I first experienced the falling away of body and mind, even a tiny bit, it was as though I had been a tightly wound spring, and I thought, I’m going to continue to unwind forever. There was such relief and relaxation and peace in the realization that this constriction would keep letting go. I could just look forward to more and more relaxation. Throughout my life I have continued to feel that spring unwind, a little bit at a time. We have as many lifetimes as we need to get there. [Laughs.]

Still, I will feel afraid when it’s my time, when I get that bad diagnosis and I’m on that doctor’s table. I’m sure there will be resistance and fear. So let’s admit it: The resistance is there. The denial arises. Admit that. But there will also be curiosity and wonder at the point of facing death, just because I have looked at it enough.

Your experience as both a dharma teacher and a nurse comes through in the book: you’re writing from the perspective of someone who has witnessed countless deaths. Yes, but that doesn’t mean that I don’t feel uncertainty and awkwardness as well. We bring our whole self there. It’s significantly easier for me to do this with a client than a friend.

When my mother was dying, my siblings looked to me like, Well, you can take care of her. And I had to say, No. I’m the daughter here. I have to be the daughter here. Sometimes, no matter how much practical experience you have, you have to bow to the fact that this is not your role this time. You need to be the daughter or the mother or the friend. Most of us will lose some friends, our parents, our siblings—but not that often. So it’s always okay to be who we are in these moments. It’s always okay to have the weaknesses and the confusion and the questions that we have. It’s always all right to just say, “I don’t know. I’m not sure. I’m scared. I’m worried. I’m afraid of this. I’m not sure what to do next.” It’s okay for all of those feelings to be there. We really will trip ourselves up if we think we have to have it all together.

I was thinking about this last night while sitting at the bedside of my friend, someone I’ve known for 40 years. He’s really scared to die. We learn in our practice to deal with our own suffering. We learn to recognize other people’s suffering, and we learn to see the sources of suffering. But it’s really hard to learn that you can’t take somebody’s suffering away from them. It’s important that we remember the bodhisattva Guanyin, she who hears the cries of the world. She’s the witness; she’s not fixing everything all the time—she is just seeing it. There’s so much we can do for each other, but we can’t do it all. It’s not possible to entirely comfort and console another person. They have—we have—to feel pain. It is part of this life.

Caretakers’ Dos and Don’ts

An excerpt from Advice for Future Corpses (and Those Who Love Them)

If you are dying, you can say anything you want. You can say it when you want, and to whom you want. And you don’t have to say anything at all. Most of what I offer here is for the visitor, the companion, the helper. You have to follow some rules.

Think about how you explain ordinary information: the washing machine is on the fritz, we’re out of milk, I got a parking ticket today. Then think about how you communicate more urgent news: I wrecked the car. The power’s out. It’s different. Consider how you react in an argument. That’s different, too. Do you shut down, stop thinking? Do you start to cry or yell or leave the room? We all have a pattern for difficult conversations. If you are going to spend time with a dying person, know how you handle emotional scenes. What scares you? What makes it easier? Make a list. Practice!

Listening isn’t that complicated. It’s hard, but it’s not complicated. Few of us communicate really well. We think explaining ourselves is key, but listening is the most important part. Half the energy of caring for a dying person is listening, really listening. We are driven to think of ourselves first, and spend half the time appearing to listen while we prepare what we are going to say when it is our turn to speak. So: Listen. Say: This sounds very difficult. Say: I can tell how much thinking you’ve done about this matter. Say: Um-hmm. Tell me more. Keep bringing your mind back to the present moment when you stray. Invite detail. Ask questions and make it clear that you want to know. Anxiety makes it difficult to remember information, so repeat yourself if necessary. Speak in a calm and unhurried way. Reflect what you’ve heard, because you might have heard wrong: It sounds like you are saying you are afraid. Clarify, because you might have heard wrong: Let me make sure I understand. I think you are saying . . . If you can do these things, you are almost there. Be calm. Be nonjudgmental. Repeat.

If you are spending time with a person who is dying, you be­come a protector. You are the defender of modesty, privacy, silence, laughter, and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.

You will become a gatekeeper. Everyone needs a gatekeeper! Be the one who can say with a smile, Goodbye, Aunt Lucille. The one who can reach out a hand to the visitor and say, Time to go. We’ll call when we’re ready for another visit! while walking to the door.

Visitors come in many forms. Lots of friends will just drop in for a cup of tea and a few innings of the baseball game and take the garbage out when they go. Hurray for those friends. But you may also meet what the writer Glennon Doyle Melton calls the Fixer. This is the person who is certain that my situation is a question and she knows the answer. The Fixer is on the edge of her seat, ready with the solution. Melton went through a difficult breakup, and so she also knows the Comparer: the visitor who only appears to listen, who is just waiting for the chance to explain how his experience, or his nephew’s experience, or his aunt’s boyfriend’s cousin’s experience, compares to yours. Sooner or later a visitor arrives with what I think of as one-downmanship: the person with the sad face who spends their entire visit explaining why their troubles are worse than yours.

Set boundaries—for visitors, but also for yourself. Start with setting the boundaries for the visit, and do this every time. Say, I can stay for an hour, or I’ll be here until dinner, when Mary arrives. Before you leave, tell the person when you will be back. This removes the uncertainty, the unbounded edges that can make for a stressful conversation. A boundary gives both of you a space in which to be together. If you’re going to be coming regularly, you might offer a frank contract: when you will be there, for how long, to do what. If you can’t stand daytime television, can you watch Days of Our Lives anyway? If you don’t like cigarettes, can you sit easily with someone who smokes? Don’t say: I told you to quit smoking.

There are lots of ways to help besides making soup and sweep­ing the floor. (Those are often good things to do.) You can help people write letters or arrange a meeting. Offer to buy groceries or do the laundry, drive to an appointment or organize the bills. Offer only what you can deliver: I will stay with you through the night, or I will mail these letters for you. Be specific. (Then do what you say you will do. Not to put too fine a point on it, but you only get one shot at this.) Write all these things down and put it on the refrigerator. Your friend has enough to remember without keeping track of the calendar. Don’t say: Be sure to keep me posted.

Ask permission for everything. Be aware that you have the power here. (Be willing to discuss this fact.) Ask permission until your friend says, Quit asking for permission. Ask if a person wants to talk before you plunge in with the news of the day. Would they rather listen to music or play checkers or watch The Walking Dead? Do they want to take a shower? Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat? Always ask for permission, but give permission, too. Permission to be sad, to be angry, to be sleepy or bored. To be something other than dying. To die.

Ask about privacy and confidentiality, favorite foods, how they want the room to be set up. Lights up, or down? Door open or closed? Music on or off? Agree on a signal for ending the visit. Know when to leave. Know when to be quiet.

You have to be honest with the dying person, but above all with yourself. There is nothing else worth doing here. Honesty is generosity, because when you are honest, you offer what you can truly give. Be honest about your own emotional state, without burdening the sick person. Resist your own impulses, your need for consolation, your wish for power, your urge for denial.

Know your limits. You have to grieve, and that means you have to go away sometimes. If you are hungry or need a rest, take care of yourself. If you’re anxious or worried, admit it. (Just don’t ask your friend to fix your feeling.) There’s a tricky balance between keeping your feelings in check and being authentic. You may try to downplay things, especially tears and anger, but you don’t have to hide them completely. On the other hand, you may be surprised by jealousy, irritation, and loneliness, and these are really yours to sort out elsewhere. Don’t say: Why didn’t you call me first? Why did you tell her before me?

Knowing these things is half the battle. The other half is watching and working with what happens.

A person who is ill may try to trigger your reactions. People may be testing whether you can handle talking about a difficult subject. Good listening goes a long way toward showing acceptance, and so does an open posture. Don’t stand over a person in bed or bustle around when they’re talking. Settle down, relax, keep your posture open, and try not to touch or soothe the difficulties away. You might feel a powerful urge to soothe painful feelings, to cover up. Don’t change the subject.

If there is a topic you absolutely cannot discuss, make that clear. Can you be still while a person cries? Don’t put a person in the difficult position of upsetting his caregiver. Don’t hide all your feelings under a bushel, but be a grown-up and manage your grown-up pain.

A person overwhelmed with illness may displace difficult feelings and shift attention away from the problem she is afraid to face. The big problem at hand. The ego is often about seven years old and prone to distractions when uncomfortable, like a kid who spills his milk just as you ask whether his chores are done. Adaptation takes many forms. Some people rationalize destructive behavior, ignore consequences. Some people will regress under stress, reverting to behaviors they used when they were much younger, refusing to take responsibility and looking for another person to act as the adult. There’s nothing inherently wrong with that; we all like someone else to be the adult sometimes. Just notice if it’s a pattern, and be careful. Watch the urge to become parental under stress, to take charge and try to manage the situation. Taking charge protects you from having to feel hopeless, but may not be what the person really needs.

Balance affect. If the person is hurried and talkative, you can speak slowly and listen. If they are withdrawn, you can start by doing the talking. If they are pacing, sit still. Notice incongruence. Is the person smiling while they tell a sad story? Are they clenching their fists while they say everything is fine? Dying tends to create incongruent feelings. You don’t have to challenge this. The person is working things out. Just be congruent in yourself. Don’t be afraid to cry a little sometimes; that’s congruent.

One way I might manage the hardest parts of being sick is to intellectualize my feelings. Perhaps I talk about the kind and brand of walker I want and ask you to check on prices. But I never say how it feels to need a walker (or a burial shroud). I may complain about how long it takes you to bring me lunch because I don’t want you to notice that I need help getting up from my chair. I don’t want to notice it, either. If I get angry at you for being late, I can briefly forget how it feels to need your help in the first place. Humans deflect when things hurt, and we are quick to project our struggles onto other people, using another as a kind of surrogate. I may talk about how Uncle Mario needs to use a walker now. I’m not just distracting you; I’m also testing you. I’m learning important information about how you feel about people who need walkers.

What not to say: Don’t talk like that. Let’s just talk about something happy. One of the most common ways we defend ourselves is by denial. We may simply deny what we’ve been told is true. Things not to say: My mother’s biopsy was negative. You look fine. Are you sure you’re sick? Denial is normal, but notice your own. A dying person may deny the truth for a long time. How often do we deny another’s denial? How often do we try to drag a person to the place where we think they should be, instead of meeting a person where he or she is? This is where open-ended responses help so much. Reflect on what you hear. Ask for more detail. Ask for what it means. Listen.

♦

From Advice for Future Corpses by Sallie Tisdale. Copyright © 2018 by Sallie Tisdale. Reprinted by permission of Touchstone, an imprint of Simon & Schuster, Inc.

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How to Die

As a psychotherapist, Irvin Yalom has helped others grapple with their mortality. Now he is preparing for his own end.

By Jordan Michael Smith

One morning in May, the existential psychotherapist Irvin Yalom was recuperating in a sunny room on the first floor of a Palo Alto convalescent hospital. He was dressed in white pants and a green sweater, not a hospital gown, and was quick to point out that he is not normally confined to a medical facility. “I don’t want [this article] to scare my patients,” he said, laughing. Until a knee surgery the previous month, he had been seeing two or three patients a day, some at his office in San Francisco and others in Palo Alto, where he lives. Following the procedure, however, he felt dizzy and had difficulty concentrating. “They think it’s a brain issue, but they don’t know exactly what it is,” he told me in a soft, gravelly voice. He was nonetheless hopeful that he would soon head home; he would be turning 86 in June and was looking forward to the release of his memoir, Becoming Myself, in October.

Issues of The Times Literary Supplement and The New York Times Book Review sat on the bed, alongside an iPad. Yalom had been spending his stay watching Woody Allen movies and reading novels by the Canadian writer Robertson Davies. For someone who helped introduce to American psychological circles the idea that a person’s conflicts can result from unresolvable dilemmas of human existence, among them the dread of dying, he spoke easily about his own mortality.

“I haven’t been overwhelmed by fear,” he said of his unfolding health scare. Another of Yalom’s signature ideas, expressed in books such as Staring at the Sun and Creatures of a Day, is that we can lessen our fear of dying by living a regret-free life, meditating on our effect on subsequent generations, and confiding in loved ones about our death anxiety. When I asked whether his lifelong preoccupation with death eases the prospect that he might pass away soon, he replied, “I think it probably makes things easier.”

The hope that our existential fears can be diminished inspires people around the world to email Yalom daily. In a Gmail folder labeled “Fans,” he had saved 4,197 messages from admirers in places ranging from Iran to Croatia to South Korea, which he invited me to look at. Some were simply thank-you notes, expressions of gratitude for the insights delivered by his books. In addition to textbooks and other works of nonfiction, he has written several novels and story collections. Some, such as Love’s Executioner & Other Tales of Psychotherapy and When Nietzsche Wept, have been best sellers.

As I scrolled through the emails, Yalom used his cane to tap a button that alerted the nurses’ station. A voice came through the intercom, and he explained that he needed some ice for his knee. It was the third time he’d called; he told me his pain was making it difficult to concentrate on anything else, though he was trying. Throughout his stay, his wife of more than 60 years, Marilyn, had been stopping by regularly to refresh his reading material. The day before, he’d had a visit from Georgia May, the widow of the existential psychotherapist Rollo May, who was a colleague and friend of Yalom’s. When he runs out of other things to do, he plays on his iPad or his computer, using them with the dexterity of someone half his age.

Many of Yalom’s fan letters are searing meditations on death. Some correspondents hope he will offer relief from deep-seated problems. Most of the time he suggests that they find a local therapist, but if one isn’t available and the issue seems solvable in a swift period—at this point in his career, he won’t work with patients for longer than a year—he may take someone on remotely. He is currently working with people in Turkey, South Africa, and Australia via the internet. Obvious cultural distinctions aside, he says his foreign patients are not that different from the patients he treats in person. “If we live a life full of regret, full of things we haven’t done, if we’ve lived an unfulfilled life,” he says, “when death comes along, it’s a lot worse. I think it’s true for all of us.”

Becoming Myself is clearly the memoir of a psychiatrist. “I awake from my dream at 3 a.m., weeping into my pillow,” reads the opening line. Yalom’s nightmare involves a childhood incident in which he insulted a girl. Much of the book is about the influence that his youth—particularly his relationship with his mother—has had on his life. He writes, quoting Charles Dickens, “For, as I draw closer and closer to the end, I travel in the circle, nearer and nearer to the beginning.”

Yalom first gained fame among psychotherapists for The Theory and Practice of Group Psychotherapy. The book, published in 1970, argues that the dynamic in group therapy is a microcosm of everyday life, and that addressing relationships within a therapy group could have profound therapeutic benefits outside of it. “I’ll do the sixth revision next year,” he told me, as nurses came in and out of the room. He was sitting in a chair by the window, fidgeting. Without his signature panama hat, his sideburns, which skate away from his ears, looked especially long.

Although he gave up teaching years ago, Yalom says that until he is no longer capable, he’ll continue seeing patients in the cottage in his backyard. It is a shrink’s version of a man cave, lined with books by Friedrich Nietzsche and the Stoic philosophers. The garden outside features Japanese bonsai trees; deer, rabbits, and foxes make occasional appearances nearby. “When I feel restless, I step outside and putter over the bonsai, pruning, watering, and admiring their graceful shapes,” he writes in Becoming Myself.

Yalom sees each problem encountered in therapy as something of a puzzle, one he and his patient must work together to solve. He described this dynamic in Love’s Executioner, which consists of 10 stories of patients undergoing therapy—true tales from Yalom’s work, with names changed but few other details altered. The stories concentrate not only on Yalom’s suffering patients but also on his own feelings and thoughts as a therapist. “I wanted to rehumanize therapy, to show the therapist as a real person,” he told me.

That might not sound like the stuff of potboilers, but the book, which came out in 1989, was a commercial hit, and continues to sell briskly today. In 2003, the critic Laura Miller credited it with inaugurating a new genre. Love’s Executioner, she wrote in The New York Times, had shown “that the psychological case study could give readers what the short fiction of the time increasingly refused to deliver: the pursuit of secrets, intrigue, big emotions, plot.”

Today, the people around the world who email Yalom know him mostly from his writing, which has been translated into dozens of languages. Like David Hasselhoff, he may well be more of a star outside the United States than at home. This likely reflects American readers’ religiosity and insistence on happy endings. Mondays with Yalom are not Tuesdays With Morrie. Yalom can be morbid, and he doesn’t believe in an afterlife; he says his anxiety about death is soothed somewhat by the belief that what follows life will be the same as what preceded it. Not surprisingly, he told me, highly religious readers don’t tend to gravitate toward his books.

Yalom is candid, both in his memoir and in person, about the difficulties of aging. When two of his close friends died recently, he realized that his cherished memory of their friendship is all that remains. “It dawned on me that that reality doesn’t exist anymore,” he said sadly. “When I die, it will be gone.” The thought of leaving Marilyn behind is agonizing. But he also dreads further physical deterioration. He now uses a walker with tennis balls on the bottoms of the legs, and he has recently lost weight. He coughed frequently during our meeting; when I emailed him a month later, he was feeling better, but said of his health scare, “I consider those few weeks as among the very worst of my life.” He can no longer play tennis or go scuba diving, and he fears he might have to stop bicycling. “Getting old,” he writes in ​Becoming Myself, “is giving up one damn thing after another.”

In his books, Yalom emphasizes that love can reduce death anxiety, both by providing a space for people to share their fears and by contributing to a well-lived life. Marilyn, an accomplished feminist literary scholar with whom he has a close intellectual partnership, inspires him to keep living every bit as much as she makes the idea of dying excruciating. “My wife matches me book for book,” he told me at one point. But although Yalom’s email account has a folder titled “Ideas for Writing,” he said he may finally be out of book ideas. Meanwhile, Marilyn told me that she had recently helped a friend, a Stanford professor’s wife, write an obituary for her own husband.* “This is the reality of where we are in life,” she said.

Early in Yalom’s existential-psychotherapy practice, he was struck by how much comfort people derived from exploring their existential fears. “Dying,” he wrote in Staring at the Sun, “is lonely, the loneliest event of life.” Yet empathy and connectedness can go a long way toward reducing our anxieties about mortality. When, in the 1970s, Yalom began working with patients diagnosed with untreatable cancer, he found they were sometimes heartened by the idea that, by dying with dignity, they could be an example to others.

Death terror can occur in anyone at any time, and can have life-changing effects, both negative and positive. “Even for those with a deeply ingrained block against openness—those who have always avoided deep friendships—the idea of death may be an awakening experience, catalyzing an enormous shift in their desire for intimacy,” Yalom has written. Those who haven’t yet lived the life they wanted to can still shift their priorities late in life. “The same thing was true with Ebenezer Scrooge,” he told me, as a nurse brought him three pills.

For all the morbidity of existential psychotherapy, it is deeply life-affirming. Change is always possible. Intimacy can be freeing. Existence is precious. “I hate the idea of leaving this world, this wonderful life,” Yalom said, praising a metaphor devised by the scientist Richard Dawkins to illustrate the fleeting nature of existence. Imagine that the present moment is a spotlight moving its way across a ruler that shows the billions of years the universe has been around. Everything to the left of the area lit by the spotlight is over; to the right is the uncertain future. The chances of us being in the spotlight at this particular moment—of being alive—are minuscule. And yet here we are.

Yalom’s apprehension about death is allayed by his sense that he has lived well. “As I look back at my life, I have been an overachiever, and I have few regrets,” he said quietly. Still, he continued, people have “an inbuilt impulse to want to survive, to live.” He paused. “I hate to see life go.”

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‘Money, work, family, friends: the same things keep coming up’

– Irish nurse on the regrets of people on their deathbed

Night nurses provide crucial support in the final hours of a patient’s life at home. The job is challenging but enriching.

Night nurse Mary Kavanagh: “We fall into the routine of the patient”

By Tanya Sweeney

To the uninitiated, Caroline Webb’s job may feel like a hugely difficult, almost unpleasant one. And even to Meath-based Caroline herself, the idea of returning to work as a night nurse, after years of working in other sectors, gave her slight pause for thought initially.

Caroline qualified as a nurse originally in 1991, but explored different career paths before a friend working in hospice care told her three years ago of a night nurse job available through the Irish Cancer Society.

“I first thought, ‘not a hope, I couldn’t go back into nursing again’,” she admits. “But since I got the job, I haven’t looked back. I can barely tell you how important, and how rewarding, this work is.”

In fact, speak to any of the night nurses who work alongside the Irish Cancer Society, and they are unanimous on one thing. Despite working in various outposts of nursing and care, this work is among the most profound and enriching jobs they have ever had.

That’s not to say that the work is easy. Night nurses tend to work an 11pm-7am shift in the home of a patient requiring end-of-life care. Everyone in the country, irrespective of location or financial circumstance, is entitled to 10 nights of care via the Irish Cancer Society (the service is accessed through the patient’s palliative home care team, or GP). The night nurse then feeds information back to the palliative care team to ensure continuity in care.

Chief among the nurses’ duties is to address the needs of the patient, from pain management and symptom control, and, where possible, ensure a pain-free and dignified death.

Often, the nurse on duty can end up talking with the patient on their deathbed in the quiet of nighttime.

“Usually, the same regrets keep coming up,” explains Webb. “They regret not keeping up contact with family and friends, not living life in the moment, and being worried about money when they have no need to worry about money.

“Sometimes a patient will ask us if they are going to die,” she adds. “We have to be quite truthful with people if they ask us. Often we say, ‘what do you think yourself?’ How do you feel?’

“In a lot of cases, they’re either testing us, or they realise that something is going to happen. We have to say to the family too, if the person isn’t already aware that they are going to die, and they ask us about it, we have to answer truthfully.”

As one of the most emotionally heightened and sensitive outposts of the nursing profession, plenty of compassion, emotional intelligence and tact is required for the job at hand. Life experience – and often, prior experience with loss – might also put a nurse at an advantage.

“I honestly don’t think really young people would be able for this,” observes Webb. “I don’t think someone in their twenties could walk into this situation and know what to say, or more importantly, what not to say.

“I’ve experienced the death of my own mam, and you know that people are so shocked when death finally does happen. You can relate to them and somehow tell them, without really saying it outright, that you’ve been though this yourself and can understand completely.”

Night nurses are there to provide support, reassurance and guidance to family members in their darkest moments.

“It’s an holistic, multi-faceted approach that we use,” says Lucan-based Mary Kavanagh, who has been a night nurse for a year.

“If you go into a home, it’s not like, ‘Superwoman or Superman is here’. We are doing things their way, and while a patient in hospital might need to fall into the routine of the ward, we fall into the routine of the patient. What I hope I achieve is to take the fear of dying and death away from the family and the patient.”

Though family members are only too happy to carry out the final wish of their loved one to die at home, looking after a dying patient outside of a hospital setting is daunting, and often harder than anyone could have anticipated.

“Most people want to be at home for their final days,” says Kavanagh. “After all, where is our favourite place to be, only with our own family and our own animals? Still, it’s a huge decision for a family, and what we offer is, they say, an invaluable service.”

When Sylvia Coyle spent her final days in the family home in Kildare surrounded by loved ones, the family benefited greatly from the Irish Cancer Society Night Nurse service.

“It was mum’s wish to stay at home with us and the Irish Cancer Society’s Night Nurse enabled her to do that,” says Sylvia’s daughter, Alison.

“As well as caring for her, our night nurse Geraldine talked to mum about her worries, which was a great comfort to her. Geraldine looked after the whole family – guiding us through a very difficult situation. She was invaluable to us. This is a vital service for any cancer patient who wants to be at home during their final days – we simply couldn’t have managed without it.”

Only when the nurses pass the threshold of the house do they know how the shift will unfold. Sometimes, the house can be packed with extended family and neighbours. Other times, the patient might have been in discomfort for many hours.

“Very often, you’ll see the sheer relief on a family member’s face when you get to the door,” says Louth-based Carol Adams, who has worked in nursing for 25 years. “They’re just so happy that someone can care for their loved one, and they might be able to get the rest needed to function for the next few days. The families we work with are so resilient and strong for their loved one. The love of a family in this situation is truly amazing to witness. It’s very special.”

Many people hope for, and often expect, a peaceful death for their loved one. Unfortunately, reality can get in the way, and a person’s final days can often be fraught with shock and unexpected upset. It can lead to challenging moments for everyone involved.

“One very distressing thing that can happen is what we call ‘terminal agitation’,” explains Webb. “It can happen with very young people when they don’t want to die and they fight with everything they can. They won’t settle and often have to be sedated. It can be very upsetting.”

Maynooth-based night nurse Emer McGearty says that trying to encourage a peaceful and relaxing environment in the home can help with the unexpected agitation of patients.

“It can be very shocking for a family to witness that,” she agrees. “You don’t want their last memories to be of their loved one being so unsettled. You want their memories of them being relaxed and at ease.”

“The other thing that can be challenging is when family members may not be on the same wavelength as we would be about things like medication,” notes Webb.

“You might also be dealing with family dynamics and it can create a bit of tension. In this case, as a nurse, you can’t take part and you can’t take sides.”

McGearty says that a good night nurse will need to be in the right frame of mind heading into a shift.

“You have to leave personal or family issues at the door and make yourself totally available for the family and the patient,” she says. “Likewise, you need to be able to switch off after a shift and to not bring it home with you.”

Yet naturally, some patients linger on in the memory.

“Every case is sad, but it’s particularly sad if it’s a young person, or a young person with young children,” notes McGearty. “One or two people really stick in my mind – there was one young man in his twenties who had a toddler, and another lady my age with breast cancer, who had children the same ages as my own.

“You also hear a lot of people who were in good health their whole lives, and maybe put off having a holiday or travelling until retirement, but were diagnosed with cancer soon after they retired. It does put everything into perspective, and make you really appreciate what you have.”

The service is funded almost entirely by public donations to the Irish Cancer Society. Boots Ireland and the Irish Cancer Society have recently launched their annual ‘5K Walks for Night Nurses’, taking place in Dublin and Cork on August 17.

To date, Boots employees and customers have raised over €1.3m to fund the service, which adds up to over 3,715 nights of nursing care for families around the country.

In 2016, the initiative introduced Honour Tags, which are on sale in Boots stores for €2. Customers can purchase a tag in honour of someone who has passed away from or survived cancer. “The service really isn’t there without the help of the public,” says Kavanagh. “At the time my father passed away, I didn’t know the service was available, and I really wish we had.”

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What does it mean to have a ‘good death’?

By

What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

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On death and dying: Do Jews have a choice?

by Martin J. Raffel

There is an old saying, attributed to Benjamin Franklin, that “in this world nothing can be said to be certain, except death and taxes.” Though loathe to get into discussion of the latter, said founding father was obviously correct about the former. At some point, all of us will face an end-of-life situation, and for those of us in New Jersey, the state might soon give us some degree of control over when and how we choose to die.

I refer to the Aid in Dying for the Terminally Ill Act, which is currently pending in the New Jersey state legislature. This legislation would allow physicians to provide life-ending medication to mentally competent patients who are at least 18 and have a terminal illness with a prognosis of, at most, six months to live. The patients must be able to self-administer the medication. Similar measures have passed in California, Montana, Vermont, Colorado, Hawaii, Washington State, and Washington, D.C. — all modeled on Oregon’s Death With Dignity Act enacted in 1997, the first of its kind.

“This option has brought sound public policy and improvements in end-of-life care to the states where it is permitted medical practice, and the time is now to bring the same quality of care to the people of New Jersey,” said Corinne Carey, N.J. campaign director of Compassion and Choices of New Jersey, Inc., the nonprofit, educational organization leading advocacy efforts. Sixty-three percent of the state’s residents support the measure, according to Carey.

I wondered whether there was a Jewish approach to what is sometimes referred to as physician-aided suicide. Not surprisingly, it depends on whom you ask.

I spoke with David Glicksman, an Orthodox rabbi with long-time pulpit and chaplaincy experience who currently serves on the Joint Chaplaincy Commission of the Jewish Federation of Greater MetroWest NJ. While he empathizes with the suffering of families, Glicksman said that because halacha (Jewish law) — which sees human life as sacred, clearly forbids suicide or assisting in suicide— he would oppose the pending legislation.

That said, “passive euthanasia,” the withholding of life-extending measures, as opposed to taking affirmative steps to end a life, is not necessarily a halachic violation. For example, he said, while actively removing a feeding tube or respirator would be unacceptable, one might not be required to replace a tube once it is removed.

But “if a patient asked me whether Jewish law permitted him or her to intentionally starve to death to end their suffering, I would have to answer in the negative.” Still, Glicksman said, he would “without judgment…comfort that patient as part of my pastoral responsibilities.”

On the other hand, Richard Address, a Reform rabbi and the director of Sacred Jewish Aging — a forum that promotes discussion about the revolution in longevity for baby boomers and their families — supports the legislation. “As a non-Orthodox rabbi, I view halacha as an evolutionary process, not rooted in an act of divine revelation,” he said. “Its genius is that it is a product of the social, political, economic, and religious context of the day.”

Address understands the portion of the verse in Deuteronomy 30:19 which states, “You shall choose life, so that you and your offspring will live,” to mean that “the ultimate decision of when to end life rests with me.” This is not a spur-of-the-moment decision, he said. “It’s a product of a lifetime and is driven by three factors: autonomy, the relationship with self; the impact of life-extending medical technology on quality of life; and one’s own spiritual beliefs.”

I speculated, and Address agreed, that it’s the baby boomer generation driving the momentum behind more liberal aid-in-dying laws. This is the generation that brought American society the sexual revolution and women’s liberation. Now that our parents’ generation is rapidly passing into history, we boomers have reached the ‘on deck’ circle and we’re aiming to change the culture on death and dying.

Rabbi Marc Kline of Monmouth Reform Temple — citing the 14th-century Catalonian Talmud scholar Rabbeinu Nissim, and Jewish bioethicist J. David Bleich — said, like Glicksman, that Jewish law prohibits taking active steps to hasten death. But their teachings, Kline said, support the option of praying for death as relief from an unbearable situation.

Stephanie Dickstein, speaking from experience — the Highland Park resident and Conservative rabbi works with older adults and end-of-life and bereavement issues — said, “It is not routine for families to be given emotional or practical preparation for the realities of caring for a loved one whose illness is reaching a terminal stage far enough in advance.” She does not believe the only choice is either using medical technology to extend life at all costs or allowing doctors to end life. “We can have policies and practices which make it the norm to support quality of life and comfort in the final chapter of life, rather than actively involving physicians in prescribing substances to end life.”

I also spoke with Jeff Feldman, advocacy coordinator of the North Brunswick-based New Jersey chapter of the National Association of Social Workers. His organization endorses the legislation, he told me, because “as a profession, social workers believe strongly in the value of self-determination for our clients. An individual with a terminal illness should be able to choose the time and method of their passing, rather than being placed at the mercy of their illness.” Social workers, he explained, often are the professionals with clients and their families during emotional end-of-life situations. “Hospice and palliative-care social workers…are called upon to non-judgmentally lay out for the client all of the available options,” and from his perspective, the more options available to the client, the better.

Just where do I stand? I’m with Address and the social workers in support of the pending legislation. Obviously, I agree with Dickstein that we should have a more effective palliative care system. But at the same time, not seeing myself as bound by a strict interpretation of halacha, I want a greater variety of end-of-life choices. That’s on a personal level.

On a societal level, I don’t think those whose religious or ethical beliefs regard the ending of life as immoral regardless of the circumstances should dictate our public policy.

No one likes to have these discussions, but, inevitably, such difficult medical and ethical decisions still have to be made. Whether you support or oppose this legislation, we all would be well served to thoroughly explore these issues not only with our loved ones, but in appropriate communal forums, as well.

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