Thursday, 28 Mar 2024

Opinion | Mourning the Demise of a Zen Place to Die

There are more than a million and a half nonprofit organizations in the United States, and more are being born every day. But for all the writing about how nonprofits can be founded and scaled, almost no one publicly interrogates the other end of the life cycle: What happens when a nonprofit dies?

The Nonprofit Quarterly reports that, although data on nonprofit closings are notoriously difficult to confirm through the Internal Revenue Service, the most likely age of organizational death is between six and 15 years. Tens of thousands of nonprofits close their doors every year, but we rarely harvest the lessons of their failures.

In August 2015 I wrote a Fixes article about a model of how humans might die less expensively and better. According to the National Institutes of Health, the 5 percent most seriously ill Americans cost 50 percent of health care spending, with most costs incurred in the last year of life in hospitals. Enter Zen Hospice Project, a small nonprofit experiment in helping people in San Francisco die with less medical intervention, surrounded by beauty and care.

The essay ended: “For those who do die at Zen Hospice Project (the whole point, of course), the send-off prioritizes the senses as much as the months that led up to it. The body is brought outside to the maple tree on the back porch and sprinkled with rose petals before a crowd of those who care, from the doctor to the plumber. People say a few words if they feel moved.

“Or they just sit in silence for a few minutes — a sacred pause before life marches on.”

Well, as of late last year, the program’s “Guest House,” which welcomed the dying, is itself dead. After three decades, the last rose petals were sprinkled on the last body and the old Victorian home in the Hayes Valley neighborhood was shuttered, repainted and sold for $3.25 million.

Although the mindful caregiving training that took place at the house will continue at other locations throughout San Francisco, under the Zen Hospice Project name and the supervision of a longtime director, Roy Remer,, this dedicated home will be grieved, since its character and atmosphere exuded the soul of the nationally famous project.

It seems appropriate to take a journalist’s version of a sacred pause before life marches on and ask why.

One way to answer why the home was abandoned is simple: money. The board and leadership team hadn’t done a sufficient job of ensuring that there was enough funding to keep the place going. But after interviewing a wide range of people connected to Zen Hospice Project over the years, I’m convinced there’s more to the story than that. And I believe there is a lot for the whole nonprofit sector to learn from the death.

‘Lost in the Story’

“In my heart of hearts, I believe people got lost in the story of the house,” said Ladybird Morgan, who served three different times as interim director of nursing.

“The story of the house” was everywhere — in a TED Talk in 2014 by Dr. B.J. Miller, then the executive director (nearly nine million views to date), on the cover of California Sunday Magazine and in an Oscar-nominated short documentary, “End Game.”

According to the organization’s I.R.S. Form 990, contributions increased only about 7.5 percent from 2014 to 2015. “The focus was lost on what we actually do and what we do well,” Jolene Scarella, director of nursing from 2015 to 2017, explained. “We had such big language for such a tiny place.”

Many nonprofits pine for a TED Talk or a profile in a major newspaper. It logically promises funding, and fund-raising is often the most time-consuming and soul-crushing part of a nonprofit leader’s role. But not all media attention translates into donations. And even those organizations that do benefit monetarily must weigh the time and energy it takes. Many people spend a month preparing for a TED Talk — a lot of staff time.

“I could feel the way in which I was distracting from the mission of the place, even as I was spreading our message more broadly than ever before,” Dr. Miller said. “It’s part of why I left.”

He resigned in 2017.

Most of the staff members I spoke with who worked at the Guest House — preparing medication, washing bodies, having hard conversations — felt unsupported near the end. What was created to be a place focusing on paying attention to the person right in front of you became absorbed in talking about paying attention to the person right in front of you.

It’s not as if the two functions are incompatible — many efforts to bring social change involve both constructing a new way of doing something and evangelizing on that new way. But an organization needs a staff that can do both well.

‘Little Fires Everywhere’

It wasn’t just media hype that made things challenging. The internal culture at Zen Hospice Project became notoriously toxic in recent years. Many people felt it got demonstrably worse when Dr. Miller left and George Kellar, a business executive, took over. (Mr. Kellar declined to be interviewed for this article.) Diane Mailey, who worked at Zen Hospice Project in various roles from 2011 to 2016, said, “Our funding was actually on a good trajectory, but as they say, ‘culture eats strategy for breakfast.’”

While many staff members and volunteers blame Mr. Kellar, others also point to tension that had been long developing between the volunteers and the staff. Zen Hospice Project was known for its volunteer training program, which taught highly vetted people to slow down and cultivate awareness.

Part of why the founders were so committed to this training was that they knew, from personal experience, how easy it is to get lost in your own projections when you’re at someone’s bedside. Frank Ostaseski, a founder, who has “accompanied” over 2,000 dying people, explained: “It is not normal to be with dying people every day. That means that our normal coping systems just aren’t sufficient. We knew it was important for the organization to address that.”

And yet, as the years went on, the rigorous commitment to mindfulness became stronger among the volunteers, but weaker among the staff members, many of whom were hired without experience with palliative care or mindfulness training.

Some of those who experienced the volunteer culture at the house thought that, for all its merits, it also had a tendency toward righteousness. “Anything can be appropriated by the ego, including mindfulness,” Mr. Ostaseski said. “Mindfulness practice is not about self-improvement or creating a club. It is really about being able to meet what’s in front of you.”

A chasm that proved debilitating formed between the staff members, volunteers and leaders, Ms. Morgan said. “When you’re surrounded by the discomfort of death and dying,” she said, “ it is tempting to try and escape into your role of nurse or volunteer and somehow separate yourself. Instead of tracking your own emotions and acknowledging where you are struggling, you focus on external details, most commonly, what someone else is or is not doing.”

Or, as Dr. Miller put it, “You could sort of watch people start little fires everywhere as a way of distracting themselves from the big thing threatening to engulf us all — death itself.”

And herein lies another lesson: Don’t underestimate the psychic toll of your organization’s work on the workers. Any organization dealing in human services has to attend to the messy human reality of their project. What happens inside the organization is not irrelevant to the larger mission. It can make or break it.

‘Why Scale?’

Thousands of people died at Zen Hospice Project, many of whom might otherwise have met a far less loving end. Relatives of people who died there often talk about the time with an almost ethereal quality of gratitude — as if it were outside of time and space, superhuman and so exquisitely human at the same time.

Alicia Garza, a co-founder of the Black Lives Matters movement, experienced her own mother’s death at Zen Hospice Project last April. She talked about crying when she arrived at the Guest House, blown away that her mother — the last resident to die there — would get to rest somewhere nonmedical, a place where she could have a glass of wine, eat her favorite lemon poundcake and have her nails done. Ms. Garza said, “We experienced angels in the care that our family received.”

It’s understandable that people who have benefited from such a powerful experience want it for more people. As Ms. Garza put it, “Why does our care infrastructure get left to nonprofits that rely on philanthropy and good will?”

Six beds isn’t a lot. Often those dying at Zen Hospice Project actually lived much longer than expected — something their families attributed to the exquisite care. It was a huge comfort for those individuals and their families, but it was small in the scheme of things. Mr. Ostaseski remembered: “Everybody wanted it to be bigger. Even from the very beginning, and I would always ask, ‘Why scale? We’re doing what we do really well.’ It wasn’t false humility. It was integrity.”

That tension occurs in many organizations. The default assumption seems to be that if something is working well, it should grow. But Zen Hospice Project was just one of many institutions whose appetite for growth may have killed it. As longtime community members searched for ways to move away from the nonprofit model, they grew worried that they were losing the essential beauty of the place — the focus on humans, not fees. “Among the volunteers,” Mr. Remer said, “dying is viewed as inherently spiritual and not medical. This points to a constant tension in this type of community: running a business versus being part of a quasi-spiritual community.”

It’s not that scaling is inherently bad or dehumanizing, but it’s also not inherently good or necessary. Too often, our current philanthropic climate presses nonprofit leaders to feel that they must get exponentially bigger and seek out ways to be self-sustaining financially, rather than depend solely on donations, to be worthwhile. In fact, solving most large-scale problems that we face — like how we die in America, which intersects with so many of our largest systems — would require a whole range of carefully sized solutions and financial models.

The Afterlife

For now, Mr. Remer is trying to take what was most special about the Zen Hospice Project’s approach — the emphasis on mindful caregiving — and strengthening it. He has dreams of putting the training online and measuring how this kind of training helps the bottom line for big hospitals. His hunch is that there are fewer emergency room visits and after-hours calls when relatives know how to breathe and cope, and less burnout for professionals who have learned how to process their secondary trauma, which means less expensive turnover.

Parker Palmer, a Quaker author, has written about how, just as we often try to delay the death of people we love, many people involved in social change resist the death of “our” organizations. Too often, he has written, “organizations seem less interested in change than in preservation” because “there is a part of human nature that would rather remain hopeless than take the risk of new life.”

To Zen Hospice Project’s credit, it is mourning and moving on. Mr. Remer admits: “As with all death, there is sadness, but there is also relief. The question is: what can we create now?”

Courtney E. Martin, a co-founder of the Solutions Journalism Network, which supports reporting about responses to social problems, is the author of five books, including “Do It Anyway: The New Generation of Activists.”

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