Zen & the Art of Letting Go
Dr. BJ Miller Helps Create a Caring Circle at Zen Hospice Project
by David Rosenberg
The sign on the white Victorian house on Page Street in the Hayes Valley neighborhood of San Francisco reads “Zen Hospice Project,” but the roots of this building go much deeper than its current incarnation as home to chronically ill patients, including those with AIDS (six months to live or less).
Its history is tied directly to the AIDS crisis in America. The residential facility was originally established in 1987 by the San Francisco Zen Center to provide community-based hospice services to San Francisco’s indigent cancer patients.
The AIDS epidemic changed that mission. Suddenly the center’s Guest House was on the frontlines, at the very heart of the firestorm. As one of the first responders to the crisis, mostly volunteers at the Guest House provided care for AIDS patients where others would not. Fear and misunderstanding were replaced by compassion and support.
ZHP is technically not a hospice but rather a licensed residential care facility, providing 24-hour nursing care as an independent non-profit, without any government funding. Last year over seventy-two residents and 290 family members were part of the ZHP circle. Their trained Volunteer Caregivers also serve at Laguna Honda Hospital, extending its compassionate reach. They provide daily support on the sixty-bed hospice and palliative care floor at the hospital, one of the largest public long-term care facilities in the United States.
ZHP emerged as an enduring gift from those terrible years of the AIDS epidemic. Its current director, Dr. BJ Miller, is singularly and uniquely positioned to honor those gifts. This affable doctor with boyish good looks and a palpable compassion connects to his own journey as a reflection of how healing can come out of challenges, and hope out of darkness.
BJ was raised in Chicago, Illinois. His mother, a survivor of childhood polio, used braces and crutches during his childhood, and in later years, a wheelchair. From a very early age, BJ was aware that people were more than their bodies. Growing up “just knowing in my bones that life was more than body parts was an incredible gift. And she helped me realize the myth of independence at an early age—no one is absolutely independent, so drop the striving! Rather, we can celebrate the fact that we are interdependent.”
His compassion may have seeds in his family experience, but it was forged in an event that changed his life completely during his sophomore year in college.
While attending Princeton—studying art history—the strapping 6’5” BJ left a party to hang out with friends. He impulsively decided to jump on top of a tram train car that ran at the University. The wires were live and 11,000 volts shot through his body. The resulting burns left doctors no choice but to amputate his left hand and both his legs below the knee.
The pity period was brief, as BJ moved forward into life as a triple amputee. These seemingly devastating injuries—which to some
appeared to be a huge hurdle to overcome—surprisingly resulted in very little lingering trauma for BJ. “The injuries furthered and confirmed traits and thoughts and behaviors already in me, and they allowed me an excuse to cease comparing myself constantly to others, and to own my life in a new and welcome way.”
A further loss when his sister committed suicide led to his decision to become a doctor. “It was the chance to transform suffering into something positive.”
He completed his MD degree as a Regents Scholar at the University of California, San Francisco, did his internal medicine residency at Cottage Hospital in Santa Barbara, where he served as Chief Resident, and continues to attend at the Palliative Care Service at UCSF.
His physical differences, to an outsider, might seem to be a barrier to doctor-patient relations, but in fact the topic hardly ever comes up. Instead, it is a communication of unspoken empathy. “The patients, when they first meet me, understand instantly that I have been in the bed.”
Dr. Miller and ZHP seem to be a perfect fit. His vision of a unique approach to its HIV and chronically ill patients works off a new integrated model for end of life care, one very rare in the entire country.
It is evident immediately in the physical structure of the building. There are six beds in five private suites—all with high ceilings and natural light. Victorian-style living rooms with fireplaces provide common space for families to gather, along with an outdoor garden with flowers and benches, and access to a nearby park.
The key to ZHP’s groundbreaking success is its focus on caregiving as a significant and deeply human service. Inspired by the practice of alleviating suffering, ZHP takes a secular approach to addressing the unnecessary anguish and stress associated with facing mortality. By integrating deep compassion and inter-connectedness with advanced clinical care, ZHP attends not only to the physical pain of those facing end-of-life, but also to the complex range of emotional, spiritual, and existential issues felt by the dying as well as their loved ones and caregivers. It is BJ’s hope that it is a transformative experience for the entire circle.
The resident determines and leads the treatment protocol, and not the other way around. At the Guest House, nursing staff are available around-the-clock and coordinate with Volunteer Caregivers to provide symptom management and emotional support. Available therapies including massage and live music, and appealing nutritious food is prepared for all visitors. In addition, there is space for residents and their families to explore spiritual or existential issues that may be important to them, such as their fears or sense of purpose and meaning in life. Such support is offered for all residents as they desire, with respect to their particular beliefs or lack thereof, in order to help them find what peace and comfort they may during this very challenging and profound time.
When a resident passes away at the Guest House, their death is treated with as much respect as when they were alive. ZHP offers several passing rituals, but only with the consent and decision of the surviving family. This can be a bathing ritual, where family members anoint the body with an herb tea, as a chance to gather and share stories. There is a flower petal ceremony as they leave the house for the last time, or simple meditation gatherings. Twice a year an evening of remembrance is also hosted.
At ZHP, being grounded in the present does not lessen the need to honor the past. “I think one of the wonders of the past many years is that HIV is not the wholly unique phenomenon it once was. Now it is part of a larger sphere, and with that it has more in common than in conflict with the rest of human miseries and inspirations. By virtue of where we live, and the history of Zen Hospice, it is, however, always among us, one way or another.”
For now, BJ is energized by his intimate work among those who are in their final months. “We all suffer, and we all die. Those common bonds give us all hope for a life well-lived.” At Zen Hospice Project, Dr. Miller is making that hope a reality.
David Rosenberg is an L.A.-based TV writer. He was a Humanitas Prize finalist for his work on the Nickelodeon series Rocket Power, and is currently writing Lost Treasure Hunt, an animated history series pilot for children airing on PBS in the fall. He is also founder of SoldierCare, a humanitarian nonpolitical outreach initiative for wounded and PTSD veterans, and has advised GrassrootSoccer, the global children’s HIV/AIDS initiative. He profiled GRS founder and Survivor winner Ethan Zohn (November 2003) and male model turned activist Lane Carlson (November 2008) for A&U.