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The Hardest Decision

IN THE ABSTRACT, "Choose life" is a powerful imperative, one that ought to weigh heavily in the mind and heart of every believing Jew who faces a difficult end-of-life issue. If "Choose life" means prolonging life, we are lucky to live in a time when medicine has a stunning array of means to make that possible. A person who, in an earlier time, would surely have died, may now be kept alive for an extended period, often in comfort and with minimal pain. In many instances, prolonging the life of a loved one may be a blessing, both for the dying and for the family.

But it may also be a curse. That is because literal and slavish adherence to the principle, "Choose life," does not allow for the nuances of individual situations. There are times when choosing death, accepting its inevitability, may be a higher good than choosing artificially sustained life.

In August, 1998, my mother, almost 90, was hit by a massive stroke that left her paralyzed on one side of her body and unable to speak or swallow. Because she was already in a weakened condition from a minor stroke suffered earlier in the summer and from a longstanding heart condition, the doctors were skeptical of her recovering any of her lost functions. They made it clear, however, that she could remain alive — for how long, no one could predict — with the aid of artificial nutrition and hydration.

My brother and I, the two responsible parties, were well aware of the dictum "Choose life." We could easily have been guided by that and approved insertion of an abdominal feeding tube, as her doctors suggested. But my mother had signed a medical directive (a living will) specifically requesting that she not be kept alive in that manner. She had shown me the document a couple of years earlier, and I knew that copies were in her doctor's and the hospital's records.

The doctor warned that we had only a couple of days in which to make a decision: to place her in a nursing home with a feeding tube, or in hospice care, withholding food and water and keeping her as comfortable as possible until she died by natural processes ¡ª which the doctor guessed would take up to a week. When he left us, we looked at each other and saw fear in the other's eyes. Life and death were now in our hands. Was our primary obligation to follow her wishes, or was there some higher principle that nullifies kibud av ve'em? Would denying her food be tantamount to an act of murder? With either course of action, would she suffer?

It was impossible to determine her level of awareness, to consult her. Right after the stroke occurred, she babbled unintelligible syllables, baby talk, then nothing. We asked her to nod or blink in response to questions. No response. If she was thinking anything, we had no way to know it.

Overwhelmed by the gravity of the decision we faced, I asked my dear friend and former rabbi, Dr. Elliott Rosen, a family therapist and hospice consultant, to help us think through our dilemma. Nothing is more difficult, he said, than withholding food from a loved one, especially from the very person who personifies love and feeding. He assured us that she would not suffer hunger pangs or discomfort from lack of nutrition — our paramount concern. Lack of fluids would cause dryness of the mouth, but moist swabs and ice chips could relieve that.

Back and forth we went over the bottom-line issue: If we followed her wishes, would we be hastening her death or letting nature take its course? And if we agreed to the tube, would we merely be prolonging the inevitable, and if so, for what end? To hang onto a slim hope, more like a fantasy, that she might make some recovery? To enable us to hold onto her physical presence a while longer? To spare us any guilt over having helped to hasten her end? In that case, the only thing on our conscience would be the knowledge that we had betrayed her wishes and had contributed to her prolonged suffering. Could we live with that? It was a Hobson’s choice.

We talked about the fact that Mother had not written her directive naively or out of abstract idealism. She had had ample opportunity in her life to witness dying and death, most recently as a seven-year resident of an assisted living facility in which the details of illness, hospitalization, dying and death were a main topic of dinner-table conversation. And in almost fifty years as a rabbi’s wife, she had acquired intimate knowledge of families with a loved one on life support and understood the agony of that situation.

We also talked about the fact that mother had begun withdrawing from life months before the strokes began, by refusing to engage in favorite activities, by paying less attention to her appearance, which had always been important to her, and by not eating, only reluctantly agreeing to drink Ensure, a nutritional drink, on doctor’s orders. Though we were concerned about these changes in her, we could hardly have realized — or did not want to accept — that she had already set out on the last phase of her journey on earth.

In the end, we concluded that there is a crucial difference between starving to death someone who has even a slim chance of recovery and allowing a dying person to die a natural death — that “Choose life” did not mean forcing someone to remain alive through a surgically inserted tube in the stomach. “Letting nature take its course” were the words that finally brought me clarity, resolve and peace of mind.

Hospice at home was not feasible, but she spent her last days — six, as it turned out — in a secluded, comfortable room in the nursing home, under the supervision of a hospice team. At least one family member was with her at all times, except during some night hours when a nurse was in charge. It was a time of great sorrow and pain for us, letting go of our mother and grandmother and watching her slowly loosen her hold on life. It was a time of tenderness, as we sang to her the songs she had sung to us — Yiddish, English, Hebrew — a vast repertoire. It was a time of tears and laughter — over her foibles and ours, our misadventures and confrontations. It was a time to ponder the strong imprint she had stamped on our lives.

On one of the early days in hospice, at the urging of the social worker, we stood by Mother’s bed and explained to her everything that had happened, what the doctors had said, and the decision we had made to withhold food and fluids. We had been instructed to ask her whether she agreed to this course. Her eyes were closed. Did she hear us? Did she understand what was said? For what seemed an eternity, she made no sound or movement. I imagined the words we had spoken filtering slowly through her fog of semi-awareness, something like the state between deep sleep and wakefulness.

My brother was on one side of the bed, I on the other. I was holding my breath, praying for a response. So many times I had looked to her for approval, for things that were, in retrospect, laughably trivial. Now we needed desperately for her to make some sign, approval or disapproval, in this, the most critical decision affecting her life.

At last her head moved, her lovely head crowned by a cloud of still thick, curly white hair. The downward movement was slow and barely perceptible, but it was an unmistakable nod of assent. Then, in the first and only voluntary movement we had witnessed, she turned her head slowly toward each of us, in turn, as if bidding us to come closer. As we leaned down, she covered our faces with tiny, fluttering kisses. It was a miraculous moment.

Her death was not as free of intervention as we might have wished. During the last day or two, she became restless, and the hospice doctor started her on morphine. The last day was not easy. She tossed about and began the labored breathing known as Cheynes- Stokes, which characterizes the approach of death. We called the hospice office and asked that the rabbinic chaplain come as soon as possible.

The rabbi, a pleasant, sensitive man with whom we had talked perhaps less than we should have, arrived as the heavy breathing stopped. Standing next to her, he recited the Viduwi, the last confessional, for her. We children and grandchildren stood hushed and frozen, awed by the awareness that she was hovering at the brink of death, clinging to the edge of life by sheer will until this final ritual act would be completed. Her eyes were on the rabbi’s face as he recited the Shema.
. . . Adonay ehad.”
And then she was gone.

I will live the rest of my life with that small, nagging doubt: Did we do the right thing? My comfort is the knowledge that had we intervened, we — and she — would have suffered for that decision as well. So we live, trembling, with the knowledge of our frailty and fallibility. She was ready to go and wanted to go. Which God is it who would have commanded otherwise?

 

Type: RT Article

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