Liza Lister, 6, died from her two-year battle with leukemia the way she had wanted — in her mother’s lap. Her mother, Dr. Elena Lister, a psychiatrist and analyst at Columbia and Cornell medical centers, credits the support she received from hospice care with making that possible.
Hospice care involves a team approach to caring for the terminally ill. It sends team members — including a specially trained social worker, a volunteer, a rabbi, a registered nurse and a physician, if needed — into the patient’s home. “What hospice offered was a responsive network — an individualized plan that did not require us to leave our medical care nor change what we did not want to change — that specifically filled in where medical care could not,” Lister said in remarks last week at a conference of more than 300 health care professionals and rabbis. “They made it possible for us to do what was most important for all of us — be together, be with Liza, have Liza where she felt most comfortable — at home,” she added. “They allowed us to fight for every bit of her life possible, even while helping us prepare for her death. They conveyed to us that Liza’s care was not over just because they could not eradicate her cancer. This too was a phase of her life and they were prepared to care for her during it. Not just her — all of us.”
UJA-Federation and the year-old Shira Ruskay Jewish Hospice Information Service of the Jewish Board of Family and Children’s Services (JBFCS) sponsored the conference. It is believed to have been the first such conference held at the UJA-Federation office in Midtown Manhattan dealing with hospice care from a Jewish perspective. Before her death from cancer last December, Ruskay was a member of the advisory committee for the Jewish hospice information service that now bears her name. She was a hospice care social work supervisor for the Visiting Nurse Service of New York. One of the problems addressed at the conference is the misperception in the Jewish community that hospice care is against Jewish law.
“Even those not versed in Jewish law believe that Jewish law says one must never give up on life,” says Rabbi Amy Eilberg, a pastoral counselor and consultant to the National Center for Jewish Healing.
Citing rabbinic sources, Rabbi Eilberg said patients may properly opt not to have a particular form of treatment if they consider it too risky or are fearful of it. Such patients, she said, “may choose hospice rather than care that is aimed at a cure.”
“Dying patients do not fear death as much as they fear pain,” she said. “Death is a part of life, a part of God’s creation. Life’s finiteness is a part of its beauty. … Hospice care is a quintessentially Jewish way. Hospice care is the most compassionate and expert care to those facing death.”
Harriet Feiner, director of the Ruskay hospice service, said there are three Jewish hospice programs in the New York area that send teams to every county except Suffolk. Although those programs have some beds available at the medical institutions with which they are affiliated, they are only for brief respite care. Feiner said she believes there is a need for a residential Jewish hospice, similar to the one at Calvary Hospital in the Bronx, a Catholic institution.“I was asked to look at gaps in service and this to me is the largest gap,” she said.
Pinchas Berger, director of Jewish community services at the JBFCS, said it is unlikely the Jewish community can duplicate Calvary because “it was created with a waiver of state law that allows it to receive government reimbursement as though it was a hospital.”
Among those attending the conference was Dr. Aimee Telsey, who works in the neonatal unit at Beth Israel Medical Center in Manhattan. “People tend not to talk of hospice for babies,” she said. “But families need as much help as possible with issues about their dying infant. We do include social workers in our rounds with all families, but this is an area that requires more training and skill.”
Dr. Telsey added that hospice care is something that is foreign to a lot of doctors. “We’re used to doing whatever we can to save and prolong life,” he said. “It’s very hard to accept — especially for a baby — that we can’t do anymore. You don’t come out of medical school to be able to do that. I’ve been at Beth Israel 10 years and there’s a process of experiencing and learning [to deal with terminal cases].”
Dr. Jeffrey Brensilver, the head of the Department of Medicine at Sound Shore Medical Center in New Rochelle, said he has been interested in “teaching and promoting hospice. We have a palliative consultation team that tries to address the needs of patients who are at the end of their lives. We have a large Orthodox population in New Rochelle and I deal with many highly religious people. We have had many cases that were difficult because they dealt with the withdrawal of care … [and most people] tend not to address these issues.”
Rabbi Toni Shy, spiritual leader of Temple Beth Israel in Port Washington, L.I., said she had a personal experience with a hospice care team when her mother died in California. “It’s an emotionally wrenching time, but it is less wrenching knowing they were there,” she said. “They talked to you without worrying about dodging issues. They let you face death if you were able to. They were the people who were there when the rabbi couldn’t be. They were there to meet whatever needs you had.” The phone number for the Ruskay Jewish Hospice Information Service is (212) 664-1632.