Anyone who expected a seminar on end-of-life care to be depressing was in for a surprise at the March 22 “Hospice through Jewish Eyes” seminar in Scotch Plains.
There was frequent laughter, and while death was acknowledged as “the elephant in the room,” the focus was quite emphatically on life.
“We help patients make the most of every moment of their remaining time,” keynote speaker Dr. Beth Popp said. While hospice care might not include curative treatment, she stressed, contrary to what some people fear it doesn’t mean cutting short that time.
Rabbi Bryan Kinzbrunner, who gave the closing address, said hospice care is not about giving up hope, or hastening death. “It is about living in a positive way without loss of dignity, for as long as possible,” he said.
The event, held on the Wilf Jewish Community Campus, was sponsored by the Martin and Edith Stein Hospice in Somerset, the Jewish Federation of Central New Jersey, the Joint Chaplaincy Committee of NJ, and the National Association of Jewish Chaplains. The same group sponsored an event in 2010 for the general public; this one was designed specifically for Jewish professionals, to help them work out when and how, in dealing with terminally ill people, to broach the option of hospice care.
It drew 80 participants from all parts of the state, and beyond. They included rabbis, cantors, chaplains, and staff members from agencies and synagogues. One of the organizers, Susan Harris, CEO of the Oscar and Ella Wilf Campus for Senior Living — where the Stein hospice is located — said that number was “way over and above” what they had expected. “People came from as far away as Long Island,” she said. “They said it met such a need.”
The speakers said that too many Jews — as professionals, patients, and caregivers — avoid hospice care, though the cost is covered by Medicare and most insurance plans. They too often believe “myths,” they said, that it involves halting both treatment and nutrition, and that it violates Jewish law requiring the preservation of life. While there are misguided workers in hospice — as there are in any field — there should be no such clash of values, they stressed.
Popp, the director of palliative medication and associate program director of hematology/oncology at Maimonides Medical Center in New York, stressed that in hospice, decisions are carefully crafted by the patients, their families, and a multi-disciplinary group of professionals. That can include doctors, nurses, social workers, psychotherapists, physiotherapists, and even art therapists and, for families accustomed to living with rabbinic guidance, rabbis and chaplains.
Popp pointed out that people deal with illness and tragedy in much the same way as they deal with life. It is the duty of the hospice team to find solutions that work for the patients and their families, whatever their level of religious observance. No two lives are the same, she pointed out, any more than any two families are the same, “and no two deaths are the same.”
Sharon Criscione, the clinical director of the Stein hospice, led a panel discussion on ways to meet clients’ sometimes conflicting needs. Drawing on her own experience in losing her teenage son, she pointed out that young patients’ view of what they’re going through can be very different, and those caring for them need to adapt to it. The panel included Popp; Rochelle Brodsky, a nurse with Jewish Family Service of Central NJ; and Rabbi Nathan Langer, chaplain of United Jewish Communities of MetroWest’s Lester Senior Housing in Whippany.
Panel members discussed various approaches to an actual case where an anxious mother asked the hospice team not to let her dying daughter know that they were in fact hospice workers. While respecting the family’s wishes, the panelists agreed that often patients or their families try to protect one another from a truth they already know.
“People are not afraid of death,” Langer said. “They fear the unknown.” He pointed out too that the terminally ill “are no different from us. We’re all actively dying every day.” The challenge, he and the others agreed, is “to meet the patient where they are,” in terms of their beliefs, their way of life, and their final priorities.
Popp described a case with which she was deeply involved. A woman with terminal cancer had given clear instructions that she wanted no life-prolonging treatment, but then — to everyone’s puzzlement — she changed her mind.
Her daughter, after a long struggle with infertility, was pregnant with twins and on bed rest. Though they lived just 10 blocks apart in Manhattan, because neither she nor her mother could walk, they had been unable to see each other for months. The mother was terrified that her death might distress her daughter and cause premature labor, so she was asking for treatment that might be painful and even counter-productive.
Popp said that by getting a wheelchair — a solution no one had considered — the mother was able to visit her daughter, share her love and concern, and say her goodbyes. She died peacefully a little while before the double birth. The hospice workers, still sharing their concern for the family, went on to make blankets for the babies.
“You — all of us — are mortal,” Kinzbrunner said. We all struggle with “the finitude of life” and the fact “that it could be us tomorrow.” And, he added, when the end approaches, “it is truly a gift to be with people, birthing them into the next world.”