A place to meet a quiet end
Zen hospice workers give the terminally ill their presence, listening

Dallas Morning News, June 29, 2002

by Kimberly Winston

"You should know that all things in the world are impermanent; coming together inevitably means parting.
Do not be troubled, for this is the nature of life. ...
Within the light of wisdom, destroy the darkness of ignorance.
Nothing is secure.
Everything in this life is precarious."-Parinivana Sutra

SAN FRANCISCO – From the street, it looks like one of San Francisco's plainer painted ladies – a rather nondescript, beige, peaked-roof affair with the city's standard bay windows and a half-dozen or so steps leading up to a glass-paned front door.

"This is really just a house, nothing special," said Brad Byrum, the executive director of the Zen Hospice Project, which runs a five-bed guesthouse for the dying inside. "And that's partially why it works. Because people who come here are not looking for clinical efficiency. They are looking for a safe place from what terrifies them, and that's what we try to create."

What terrifies them is death – particularly their own impending ones. The three-story house is not just another of Baghdad by the Bay's Victorian relics. It is the only residential Buddhist hospice in the United States.

And, as such, it is on the front lines of a growing trend within Buddhist communities of every stripe across the country to reach out to the sick and dying through the Eastern religion's practice of mindfulness, meditation and compassion.

"There is a huge need for this kind of work," said Steve Peskind, who, as coordinator of San Francisco's Buddhist AIDS Project, is familiar with the Zen Hospice Project. "There is a need to respond to the full experience of life which includes illness and dying and death. My favorite description of what they do is ... 'Stay close. Do nothing.' That is a very powerful statement about being present, responding to needs as they arise in all events of human life."

Inside the guesthouse, "doing nothing" looked like quite a lot. The downstairs was all quiet bustle, with volunteers putting away groceries, answering the occasional phone call and watering the small, flower-strewn garden out back where residents can sit on a green lounge chair and bask in the region's often less than warm sun. A basement and a small carriage house out back hold the Zen Hospice Project's offices and paid staff of 10. There are 120 active volunteer caregivers and an additional dozen or so "special-skill" volunteers who perform everything from office work to massage.

Upstairs, the bedrooms are quiet and cozy, minimally furnished with a bed and a dresser or two. That's to allow as much room as possible for the guest to bring as many belongings to provide them comfort at the end. During this visit, a young woman with a brain tumor lay quietly behind the closed door of a back bedroom and a client with terminal cancer occupied a middle room. Volunteers moved up and down a central staircase on quiet feet and with hushed voices.

Mary Koopman, the guesthouse manager, said the project's volunteers approach their work as a two-way street. "We don't see this as a patient-focused facility," she said. "We see it as we are all in this together. We all gain from the experience."

Gaining from the experience of death is what the project – and the Buddhist approach to dying – is based on. As its foundation, the project takes the dying words of the Buddha as recorded in the Parinirvana sutra, part of Buddhist scripture:

"You should know that all things in the world are impermanent; coming together inevitably means parting. Do not be troubled, for this is the nature of life. ... Within the light of wisdom, destroy the darkness of ignorance. Nothing is secure. Everything in this life is precarious."

And although the project is firmly rooted in Buddhism, religion is mostly a silent part of the care that residents receive.

The house has no religious literature lying about, hosts no rituals, save the occasional meditation, and residents are not required to be Buddhists. The hospice welcomes people of any religion – or none – so long as they are registered as clients with a local hospice facilitator, Hospice by the Bay. They have helped prepare Passover and Shabbat dinners for Jewish residents and listened while other residents talked of meeting Jesus at their deaths. They even kept a past president of the California atheists association until his death.

"Most people who come here couldn't really care less about Buddhism," Mr. Byrum said. "The way Buddhism gets incarnated is through mindfulness and intentness and in the goodness. And that simple human kindness is not the sole property of Buddhism. All the wisdom traditions speak of it. But it is effective here because we are working with people who are in the most vulnerable time of their lives."

Nate Lewis, 57, is at that time. He has multiple myeloma, a cancer of the bone marrow. Since he came to the hospice six weeks ago, he says, no one has asked him to consider Buddhist philosophy, or any religious philosophy, for that matter. They have given him something else.

"They give me what I need in the final days of my life, to feel like somebody," he said. "To feel like a human being. I am dying, but I still have all the feelings I had before I was dying. I have dignity."

But if clients are not required to be spiritually active, volunteers are encouraged to be. The project is distinctly Buddhist in that one of its goals is to further the spiritual understanding of the nature of death and dying – and therefore of life – in its caregivers.

"We see [death] as a truth of existence," Mr. Byrum said. "If we let that truth into our hearts, we begin to discover this unconditional compassion we feel for ourselves and for others."

Ms. Koopman put it this way: "Suffering occurs when we try to hold on to something that must change inevitably. If you can bring the presence of knowing this to the bedside, you can help someone understand there is nothing to fear. And that is a tremendous gift to bring."

That has been the experience of Kim Alman, a psychotherapist who has volunteered at the hospice once a week for the past year and a half. Between trips upstairs to help with the clients, she said she looks forward to coming because, "it feels like a privilege." Facing the reality of death on a regular basis has "put me more in the moment," she continued. "It's helped me remember life is really all we have. After every shift, I go home, make a nice dinner. I just try to continue the atmosphere that is here, of caring for each other."

The Zen Hospice Project was founded in 1987 by Frank Ostaseski, a one-time Protestant minister who, after a trip to the East, found himself attracted to Buddhism. He was particularly inspired by its 2,500-year-old tradition of contemplation and acceptance of sickness, death and dying. When he returned to the United States, Mr. Ostaseski began working with the terminally ill among San Francisco's homeless. They were among the project's first clients.

Today, many clients are poor or indigent. They are usually referred by Hospice by the Bay, a San Francisco hospice program that provides nurses and other professional caregivers to the project. Others hear of the guesthouse through word of mouth, Mr. Byrum said. Most come when the traditional hospice – as a supplement to other in-home care – is unavailable or inappropriate.

"People come here when that model doesn't work for them," Mr. Byrum said. "They don't have a home, or they don't have a family of caregivers. Or they have both of those, but for whatever reason, the family and the caregivers cannot support them in their illness."

Today, the guesthouse is only one of the project's focuses. It also provides volunteers to a 28-bed facility at nearby state-run Laguna Honda Hospital and educates volunteers and healthcare professionals in compassionate caregiving. Last January, the project launched the Institute on Dying, an 11-month training program for healthcare professionals in end-of-life caregiving. Twenty students make up the first class; that will grow to 35 next year. It also hosts workshops and lectures in San Francisco and around the country.

In the past decade, many American Buddhist communities have begun services for the sick and dying. Scholars and practitioners trace this interest to the 1992 publication in this country of The Tibetan Book of Living and Dying by Tibetan teacher Sogyal Rinpoche. Buddhist communities that offer end-of-life services can be found in New York, Maine and New Mexico. The Zen Hospice Project has served as a model for many of these, though it remains the only Buddhist residence hospice program. There are other Buddhist hospices programs in England, Thailand, Singapore, Taiwan, New Zealand and Australia.

In New Mexico, the emerging Buddhist community of Kusinara was cofounded by a former Zen Hospice Project volunteer. Its members also host cooperative care workshops for civic organizations, nongovernmental organizations, monasteries and other interested groups. Kusinara cofounder Allan Cooper, once a volunteer at Zen Hospice Project, says Buddhism has a lot to bring to end-of-life issues.

"In Buddhism there is an awareness that through the understanding of impermanence, we can understand that each moment is a birthing," he said. "And when one understands that we are constantly dying and being reborn, the experiential question of what really is death becomes extraordinarily energized and there is a galvanized interest in exploring one's own death."

The Zen Hospice Project receives no government funding but relies on private donations and grants for its $950,000 annual budget. Perhaps because it is just north of Silicon Valley, donations began to dwindle with the dot-com bust, and fell off even more after Sept. 11. At the beginning of the year, ongoing donations were down by as much as 60 percent, Mr. Byrum said.

But about April 1, that began to change. Volunteers raised about $40,000 among themselves, their friends and their families. That, Mr. Byrum said, illustrates one of the main tenets the project rests on: "That human beings are innately kind and generous. Human beings want to help."