What is the “right” way to die? We’re experiencing a zeitgeist moment about that. “Being Mortal: Medicine and What Matters in the End,” by Atul Gawande, is a best-selling book. Videos by Brittany Maynard, a 29-year-old who wanted to die in a way of her own choosing, went viral last year. And in more than 20 countries, thousands of people have dined and discussed dying through a project called “Death Over Dinner.”
In fact, we can’t afford not to have this conversation. According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.
What if the most promising way to fix the system is to actually do less for the dying?
That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.
The project, which had its origins in the San Francisco Zen Center in 1987, takes the typical hospice approach of caring, rather than curing, and puts an East Asian sensibility on it. In line with Zen Buddhist philosophy, it trains its volunteers, nurses and even cooks to care mindfully. That might mean sitting in meditative silence at the bedside of someone who is dying. Or focusing on the senses as the most direct connection to the present moment of life — cooking a fragrant meal with fresh ingredients, giving a tender hand massage, singing a favorite song.
For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists.
Walk through the front door of the Guest House, as the project’s rambling Victorian home is known, and smell the strong coffee brewing or the homemade chocolate cookies cooling in the kitchen. The cookies aren’t just a nicety. According to Dr. B.J. Miller, the organization’s executive director, piquing the senses is a key strategy to dying well. “No future necessary when you’re in the moment,” he says.
Head up the creaky stairs, and you’ll meet Katherine Nigel, 99 years old, who sits in a big, plush armchair wrapped in a quilt she made. Next to her is a portable keyboard with sheet music propped on it. “I don’t like an audience,” Nigel informs me when I ask how often she plays.
She admits that she painted many of the broad-stroked portraits that hang on the walls and lets me thumb through a book that her daughter made of her bright-hued crochet handiwork; no dumpy browns or washed out greens for this Renaissance woman.
When Jolene Scarella, the head of nursing at Zen Hospice Project, first met Nigel at a traditional assisted living facility, she was in a very different state. When she wasn’t sleeping, she was hallucinating and in severe, hunger-obliterating pain. The assisted living staff had chalked up her discomfort to the inevitable scourge of dying.
But upon moving to the Guest House, Nigel seemed to come back to life (not to be confused with not dying; she’s still doing that). Scarella figured out that Nigel’s hallucinations were being caused by a pain medication, and switched her regimen. Scarella also learned that Nigel was an artist of many trades, and slowly figured out how to re-introduce arts into her life as they managed her arthritic aches. (Nigel isn’t the only artist in the house; many guests do some kind of artwork in their final days, volunteer musicians come through, and there is an artist-in-residence program.)
In the United States, according to the National Hospice and Palliative Care Organization, 44.6 percent of all deaths now take place under the care of a hospice program. People are technically “hospice eligible” when their health care provider determines that they are likely to die in six months, whether from a terminal condition or simply “a failure to thrive,” the technical term for complications because of old age.
But researchers have found that 40 percent of those receiving hospice care have been admitted after a stay in an intensive-care unit, meaning they will spend only a few days in palliative care before dying — not enough time to take full advantage of the technique’s soothing possibilities.
In contrast with the national figures, the average stay at the Guest House is three weeks.
Popular belief has long favored dying at home, but that experience can be overwhelming for the people who love the terminal patient. Caring for him or her can be far more challenging than many people anticipate, especially if the one doing the lion’s share of the caring is elderly or sick as well. Too often, family members and friends are left managing the special equipment and medication regimens rather than actually being with their loved one.
Beyond that, many people who technically die at home have still spent many of their final moments in hospitals. One recent study found that people typically moved from one care setting to another three times or more in the last 90 days of life, with 14 percent of them facing a move in the last three days.
In the Zen Hospice model, those final three months are a precious window of time, when people with a terminal condition shouldn’t be chasing more time, but reveling in what their remaining time can offer — for example, the sound of a favorite Yiddish tune, or the wetness of a beloved dog’s kiss, or even the feeling of smoke filling their lungs. Yes, residents are allowed to smoke — outdoors — if they wish.
The common threads in this approach are more sensory experience, and less spending. It costs the Zen Hospice Project about $750 a day to care for a resident. If that same patient were in a hospital, he or she would likely incur at least five times that much expense.
Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for.
Unlike home hospice services, residential hospice costs are not covered by Medicare or other insurance programs. And while reimbursement from long-term care insurance is possible, it is rare and riddled with restrictions
In reaction to those realities, the rate for room and board at the Guest House is based on a sliding scale and an evaluation by the Zen Hospice Project’s admissions team.
The Guest House has a team of nurses who cover shifts 24 hours a day, but the entire orientation is around as little intervention — and as much relationship and pleasure — as possible. Research supports this approach: One study, funded by the National Institute of Mental Health and the National Cancer Institute, found that among 627 patients with advanced cancer, more frank conversations with health care providers and fewer medical interventions coincided with reports of better experiences of their final days.
The Zen Hospice Project is small — there are only six beds in the house, three of them funded by the University of California San Francisco Medical Center (which the project says saves it hundreds of thousands of dollars per bed, per year). But the project also collaborates with Laguna Honda Hospital in San Francisco; its hospice ward houses up to 60 people in a communal, pleasure-centered way. Both places draw on the more than 100 volunteers that Zen Hospice Project has trained over the years.
Volunteers serve one five-hour shift a week (there are three shifts a day), with one hour of overlap between shifts, providing time for group meetings that include 10 minutes of meditation, followed by check-ins. Those wrapping up their shifts reflect on how everything went, and those coming in are told to openly share their current state of mind.
What might seem beside the point is actually crucial when being with “residents,” as the patients are called, explained Roy Remer, the Director of Guest House Facility and Volunteer Programs. “We train our volunteers to cultivate awareness. That means slowing down and creating a heightened sensitivity to everything the residents might be experiencing, but it also means being aware of your own emotional state as you enter a room.”
Many people who volunteer in traditional hospices, according to Remer, can come with an unspoken expectation. Some have romantic notions about the kinds of bonds they’re going to form with dying people, the kind of wisdom they might glean. Some are trying to “correct” regrets about not spending enough time with their own family members as they died. All of that can make the interaction more about the volunteer than about the person dying. Remer believes that good training in mindfulness can help people focus instead on the present moment, and on the person in the bed.
Zen Hospice Project is aimed at serving those with just six months to live (though there is no official maximum).
But here’s the rub: They pay such scrupulous attention to the senses that keep people awake and engaged with the last moments of their lives, that they often end up having more of them. Take Nigel: She has now been a resident for five months. “They treat me too nice here,” she tells me, deadpan.
“Essentially we’re exposing another gap in the system,” Scarella explains. “There just aren’t a lot of places that are built for someone like Katherine — who is dying, but is actually thriving. Where do we send her next?” A skilled nursing facility would be ideal, but there is a shortage of those, too, and it would be hard to find one that would prioritize Nigel’s artistry in the same way.
That’s why the project’s goal is not to increase the number of beds at the Guest House or to buy more houses, but to spread the idea of dying in this way. To that end, Zen Hospice Project is working with a design firm, IDEO, to gestate “a kind of movement,” according to Miller, to rethink the entire ecosystem that currently serves someone like Nigel in her final months. “We’re shifting from a disease-centered to a person-centered model in health care,” he says. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”
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.
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