Stumbling on the Edge of Life
On one of my first visits to my friend Barbara's Brooklyn apartment, she led me into the kitchen where her mother sat at the table.
"Ma," she said, "this is my friend Edie from school."
"Sit, sit, let me look at you," Mrs. Wafel responded, motioning for me to take the chair opposite hers. Scrutinizing my face, she said, smilingly, "Such beautiful blue eyes! Nu, you got brothers, right?"
"How ever did your mother know I have brothers?" I later asked Barbara.
It took us years to realize that Lonia Wafel was not a fortune teller, but rather a Jewish mother scouting out future Jewish husbands for her two daughters.
During subsequent visits I came to know Barbara's father, Beryl; her older sister, Helen; and her younger brother, Ira. Both Beryl and Lonia had lost their parents and siblings in the Holocaust. They survived the war by fleeing Poland to the Soviet Union. Their oldest child, Helen, was born in a displaced persons camp in Germany.
I continued to see Barbara frequently. We lived in the same apartment during college, participated in one another's weddings, rejoiced together at the births of our children, and encouraged one another in our professional lives. Our families shared vacations and holiday celebrations and consulted one another during hard times.
One of the more difficult times centered on deciding what to do about Beryl's deteriorating mental condition. At age 84, Beryl had begun to say things like "Can you help me find my mother's apartment in the Warsaw ghetto?" At other times he seemed completely lucid. A neurological evaluation determined that Beryl had a brain tumor, and his doctor advised the family to have it surgically removed. It remained unclear, however, if his considerable disorientation was due to the tumor or to a degenerative condition like Alzheimer's.
Lonia expressed what was on all of our minds: "I am worried that at his age he might not survive." Beryl, a gentle, self-taught, and reflective man, asked softly, "How can I make such a decision?"
"Daddy," Barbara asked, "would it help if you thought of how your parents might have made such a choice?"
"Such a choice! Yes, when I was in the Warsaw ghetto we had terrible choices to make," Beryl recalled. "You cannot imagine how we lived. There was not enough food. People died every day. It was still possible to get out of the ghetto and flee across the Soviet border, but leaving meant never seeing your family again. And risking your life."
"Mr. Wafel," I said, "how did you make the choice to leave the ghetto?"
Beryl shook his head. "I didn't choose. My mother chose. She said, 'Beryl, save yourself. You can survive. You must leave.'"
Barbara asked gently, "So what do you think your mother would say if she could be here now, Daddy?"
"I guess she would say, 'Beryl, save yourself.' She didn't know if I would make it then either, but she said to 'try for life.'"
A few days later, Beryl chose to undergo surgery. He survived, but his periods of confusion did not cease.
Over the next several years, Beryl's condition gradually worsened. What the family had suspected was true: he had Alzheimer's. He began to wander from home, and Lonia could not restrain him.
The family decided to place him in a nursing home where Yiddish was spoken. Barbara's home was nearby. Hopefully there he would feel safe and at ease.
But Beryl's condition only continued to spiral downward. For the next four-and-a-half years he enjoyed fewer and fewer activities until his only remaining pleasures were strolling, conversing, and eating. Eventually he could not walk or speak, and finally he could not feed himself. Lonia was overwhelmed by the sadness and loss. "I could not live like that," she told the family, adding in Yiddish, "nisht far keynem gedakht" ("it shouldn't happen to anyone").
It was a heart-wrenching time for Barbara, too, but at the same time she derived a sense of personal satisfaction from singing to and feeding her father. She thought of her dad's accounts of suffering from malnutrition during the Shoah; the very act of feeding him now felt reparative.
The nursing home staff did not share these sentiments. Feeding him by mouth was not practical, they said, insisting that a feeding tube be inserted to facilitate his care.
The family remained resolute. Since eating had been Beryl's last remaining pleasure, he would continue to be fed the way he would most enjoy to the end of his days.
The family asked me to officiate at Beryl's funeral. I accepted gratefully, without a clue that soon it would be my turn to wrestle with a difficult decision.
Before the service, Lonia approached me. "Can I see Beryl one last time?" she asked. She told me she wanted to say a final good-bye.
I hesitated. Lonia's heartfelt request was counter to Jewish tradition. "Traditional Judaism discourages opening the coffin for the sake of kavod hamet, respect for the dead," I explained very gently. "This allows the dead the dignity of being remembered as they were in life."
Lonia was unconvinced. She asked me again to open the coffin.
What should I do? Quickly I contemplated the "why" at the root of Lonia's request. Lonia had never had the possibility of viewing the remains of her murdered parents and siblings. This was the first chance she would have to truly say good-bye. I consented.
Barbara and I stood beside Lonia as together we raised the lid of the simple pine coffin.
Seeing Beryl's body, Lonia lightly pounded her chest in grief and shock. She began to scream: "I have lost my whole family--my mother, my little sisters and brothers, almost everyone--and I've never seen anyone I loved in a coffin! I never got to bury anybody!"
At that moment it was as if all her cherished dead lay before her. The enormity of her loss was more than she could bear.
Suddenly she felt acute pain in her back. We sensed it was serious and were about to call for an ambulance when the pain subsided and Lonia insisted that the funeral service begin.
That night, Lonia could not sleep. The chest pain had returned. In the morning Barbara brought her to a cardiologist. He told her she had suffered a heart attack the day before.
More tests ensued and finally Lonia received a diagnosis of angina. Given her age, the cardiologist advised that her condition be treated with medication rather than coronary surgery. Lonia agreed.
But Lonia would not follow her doctor's counsel to remain up north with her children for a month of convalescence. She was eager to return to the new life she had cultivated in Florida--walking several miles each day, enjoying cultural events, cards, exercise classes, the beach, and shopping excursions with her friends.
Back in Florida, her bouts of angina recurred. An angiogram revealed 80% blockage in three arteries. The cardiologist recommended bypass surgery.
Fearing that heart surgery was not safe at Lonia's age, her children wanted to get a second opinion, but Lonia was insistent: "Let me just do it so I can get on with my life. I want go back to my active life without this pain. I don't want to live as a sick person. This is my choice."
Post-surgery, Lonia was bloated and on a respirator. She was bleeding abnormally and taken back to the operating room. On day two she could barely open her eyes. On day three, when the respirator was removed, Lonia's first words were: "Ikh vil nisht leben" ("I don't want to live").
Lonia's condition quickly deteriorated. She went into respiratory arrest, the result of a massive post-surgery infection. She was now dependent on both a feeding tube and a respirator. In three weeks' time she was moved to a facility that specialized in weaning patients off respirators, but she remained partially dependent on the breathing tube, and her condition did not improve. Her muscles contracted and her hands became claw-like. She also withdrew from the family. Barbara would endeavor to massage her hands and feet only to feel her mother's resistance. Barbara's words of encouragement were invariably met with the same response: a slow turn of the head from side to side. Weeks later, Lonia looked away when spoken to or stared off into nothingness. With the new speaking device inserted into her tracheotomy she would mutter "Ikh hob nisht keyn glik" ("I have no luck") or "Ikh bin umgliklikh" ("I am unlucky").
Then, three and half months after the surgery, Lonia had a second massive infection. Antibiotics only exacerbated her post-surgical tremor. Lonia was now constantly trembling. She could no longer breathe or eat on her own. Curled nearly in a fetal position with limbs contracted and shaking, she seemed trapped in a state between life and death. There was no reasonable hope for recovery.
What were her children now to do?
Lonia had no living will. The question hovered over the family: Would Mom want further treatment?
Barbara asked me for a Jewish perspective. "Should medical treatment be continued when there is no real chance of cure and when the patient is suffering so terribly?"
"There are different opinions," I answered, "but in general in such situations we are not obligated to continue treatment, as we would be impeding death rather than supporting life."
Barbara and her siblings agreed that if their mother had a choice, she would refuse further treatment. They remembered what she'd told them after seeing other residents in their father's nursing home: "Nisht far keynem gedakht" ("It should never happen to anyone"). They thought about her decision to return to Florida when her doctor advised that she convalesce up north, an indication of how much she valued living an independent life.
Together they requested that Lonia's medications be discontinued, her feeding tube removed, and any additional intrusive treatments stopped.
The doctor's response was swift. "You are making an unreasonable request," he said. "You want to kill your mother so you want us to be Dr. Kevorkian and to kill your mother [for you]."
Barbara was aghast. "How could he say this? We've spent the past four months watching Mom suffer, despite our continued efforts to help her recover!"
The following day the doctor apologized for his lack of sensitivity. He agreed to take her off the medicine, but not the feeding tube. Barbara and her siblings were deeply concerned. With the feeding tube intact, their mother's agony would be prolonged.
Once again Barbara asked for my counsel. "Consider placing Lonia in a Jewish hospice," I advised, explaining that such organizations are sympathetic to the Jewish conviction that we must not hasten death, but neither are we to prevent it when healing is no longer possible.
After a number of calls, the family learned that Lonia had been accepted into a Jewish hospice in Manhattan, where her children could be with her at all times and where she would be allowed to die in peace. Her children made the arrangements, feeling both grateful and terrible at the prospect of having to move Lonia yet again.
The move never happened. Mercifully, Lonia died the night before she was to enter the hospice.
After Lonia's death, Barbara struggled to come to terms with the decisions she and her siblings had made. Her mother had suffered such terrible losses during the Holocaust; now, at the end of her life, her children had not been able to put a stop to her many months of anguish, despair, and pain. Doctors at multiple facilities had never told them whether or not each new treatment offered any real hope of recovery; instead the physicians had pushed treatment regardless of real benefit. The medical staff's strong opinions, combined with their own grief, had clouded their ability to act on their mother's behalf.
Today, four years later, Barbara's still feels guilty for having let her mother suffer so long. "I should have known, should have taken action sooner," she says. "I am at peace with my father. I won't ever be at peace with what happened to my mother."
Rabbi Edythe Held Mencher is URJ’s Caring Community Specialist for Jewish Family Concerns