April 4, 2002
Celebrating Length of Days
"We want to teach people that to choose hospice is to choose life."
Fifteen years ago, in the city with the second-largest Jewish population in the world, the idea of a Jewish hospice service lived and died. The truth was that the Los Angeles Jewish community was not ready to support a spiritual service for the dying.
Rabbis Carla Howard and Sheldon Pennes, founders of the recently created Jewish Hospice Project, Los Angeles, think they know why.
The idea of hospice "is not very Jewish," Howard saidwhile sitting in the Skirball cafeteria after a day of teaching at Milken Community High School. "It's giving up the fight; the commandment is to embrace life, so the misconception is that if you choose hospice, then you're giving up on life."
"It's not a sexy topic," said Pennes, rabbi of Montebello's Temple B'nai Emet, "People don't like to talk about it. Lots of money [from the Jewish community] goes into medical research ... but research will not help those people who are dying, afraid and alone, every day."
In the past, hospice defined a safe house where pilgrims and the homeless were offered lodging, usually by a religious order. Today, we know of hospice as a place where terminally ill patients with less than six months to live go to end their days. Treatment is palliative, focusing on pain management rather than cures, and often includes spiritual counseling in preparation for death. The idea is to treat death with dignity, surrounding the patient with family and friends rather than machines.
Though support for hospice is apparent in the general public these days, the Los Angeles Jewish community must rely on other services, such as Trinity Care Hospice, a wing of Catholic Healthcare West, which serves Jewish Home for the Aging, rather than any Jewish hospice. (The Home recently released plans to open a 16-patient hospice, available to the communty, when their new facilities open at the beginning of May.) Until recently, even Cedars-Sinai had only a per-diem rabbi on call to serve Jewish clientele.
A year ago at a Purim carnival, Howard and Pennes began to talk about the need for a Jewish hospice in Los Angeles. For 11 years, Howard had studied Jewish healing and spirituality, and had served as associate rabbi for one year at Metivta, A Center for Contemplative Judaism. Pennes works as chaplain at Trinity Care Hospice, witnessing daily the need for Jewish spiritual end-of-life care. They both decided to go for it, despite the challenges they knew lay ahead.
"What bothered me the most," Pennes said, "was all the money ... after a person dies, but there's a lack of money for end-of-life care."
He cites the disparity in fees: a pulpit rabbi gets $350 for a funeral; a rabbi who visits the sick at a hospice gets $20 an hour. "There was nothing really there for those who needed this care," he lamented.
"The most important thing that we want to teach people is that to choose hospice is to choose life," Howard said. "When my pain is managed, then I can get down to the work of living. I get to say the things that I never said, make the connections to the relationships that are there, as opposed to getting the cure here, trying medical advances there. It's how to live with dying."
Not every dying patient is ready to receive spiritual care, Howard acknowledged. She found that people very much die as they live: on their own terms.
"I was called to a woman [in hospice] whose body looked like she should have given up the ghost a long time before, but she was hanging on. She made no mention of death. We just had a nice conversation, weekly, for three months," Howard said. "Then one day a hospice nurse was changing her wound and I asked the patient if there was anything she wanted to say. 'What will it be like at the end?' she asked the nurse. I facilitated the conversation, and once the nurse explained what it would be like, the woman got down to the business of tying up relationships ... and died a few weeks later."
Howard and Pennes have many similar stories of people, affiliated and nonaffiliated, who want a deeper connection toward the end. "There aren't many of us around trained to do hospice work," Pennes said. "People think pulpit rabbis can do this kind of work, but they are already so stressed to the limit, they can't give the time that hospice visits demand. Hospice care requires being with the family for months and intensive time at the end. So, basically, the work is not getting done."
Both Howard and Pennes base their work on bikkur cholim, God's commandment to visit the sick. No person's final journey should be alone, they believe. What they propose, and are doing on a limited basis now, is training medical care professionals and rabbinical students in the art of hospice.
"I teach people how to be present with people who are sick, how not to fill the space but make the space," Howard explained. "Jewish tradition teaches us that the divine presence hovers over the bed of a sick person. Our job is to reflect that divine presence [back to the person] and to help the patient, if they can, come to that spiritual experience.
"Each death is as unique as each person's fingerprint. I walk in with a sense of awe and humility.... If I'm mindful of the situation and present, then God's presence will do the healing," she said.
So far, Howard and Pennes have been struggling with "initial growing pains" (i.e., the difficulty of raising money in the Jewish community). They've had wonderful moral support, they say, and they're most proud of the fact that they have an advisory board of rabbis from every denomination who unanimously support the need for a Jewish hospice. But funds are still lacking.
"We've raised a small amount of money for our nonprofit papers, applied for some grants and hired a grant writer," Pennes said. "We need $350,000 for the initial year, and then an additional $100,000 to $200,000 over the next couple years to pay for hospice chaplains, design curriculum and training, and outreach in the Jewish community."
Howard and Pennes, who also teaches at Milken Community High School,hold various other jobs as well. They would devote themselves full time to the Jewish Hospice Project, if they could. Through outreach and word-of-mouth, they hope to find the person who can help them put Jewish Hospice Project, Los Angeles, on the map. The work, they believe, may be the most important work a person can ever do.
"The dying process strips away every identity you have as a person, everything you know and hold, and what you are left with is your deepest self," Howard said, as she rose to go, late for a visit with a sick patient. "The divine presence will help the patient be in touch with their deepest self if we the visitor, we the rabbi ... reflect back to the patient in hospice, and hold the space for them. They will do the work."