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Dying We Live

Yom Kippur, 1995

by Harold M. Schulweis

When last I spoke to my teacher, Abraham Joshua Heschel, he asked if he could borrow my kittel. He was not at home in New York but here in California and it was before the High Holidays. "You know,” he explained "the kittel is part of the tachrichim -- the shrouds in which the dead are clothed for the funeral. You know on Yom Kippur I face my mortality." When, more than on Yom Kippur, must we face our mortality?

One must be alive to one's death. Soren Kierkegaard, the 19th century Danish theologian, would tell the story of an absent minded scholar so abstracted from his own life that he half knew that he existed, until one fine morning he awakened to find himself dead. We dare not be so abstract.

You, I, and ours are living older now and equally important we have it in our hands to prolong longevity. We have the powers to extend our lives and the lives of those we love.

In the Garden of Eden the serpent seduced the human being and whispered "On the day that you eat this fruit your eyes shall be opened and you shall be as gods." We have eaten of the Tree of Knowledge. We have become as gods. And it is revolutionizing our lives. Listen to the radical changes.

The Lord gives, the Lord takes away. But we can give and we can take life. During the services of the first day of Rosh Hashanah, we heard the lament of Hannah the woman angry at her husband, Elkanah, because of her childlessness and embittered toward God because of her barrenness was heard. "I am a woman of sorrowful spirit. I pour out my soul before the Lord. Lord, look upon my plight."

That was Hanna's cry yesterday. Today, doctors and geneticists have become active partners in the creation of human life. Through artificial insemination, sex pre-selection, host mothers, test tube babies, recombinant DNA technology, Hannah need not despair. Cry no more, Hannah! You are given a child. The first successful laboratory fertilization of a human egg by a human sperm -- in vitro fertilization was reported as recently as 1969.

Science has radicalized our idea of ourselves and our prayers. The meaning of liturgy has changed. "How many shall pass away and how many shall be born? Who shall live and who shall die? Who shall be at ease and who shall be afflicted?" Yesterday, the prayer was bothersome to some because it smacked of fatalism. We resented God's decrees. But God has shared His powers with us. More than ever in history we are God's partners.

Who shall live and who shall die is in our hands.

"Who by injection and who by withdrawal of medication? Who by morphine and who by hydration? Who by renal dialysis and who by halting alimentation? Who by omission and who by tubulation?"

We have new power. With power comes choice. That is the mark of modernity: the radical change from Fate to Choice. Yesterday we might say it is all in God's hands. Yesterday we said "es iz bashert" which means "it is sheared". Today the scissors are handed into our hands. We hold in our hands what existentialism calls a dreadful freedom, a dizzying freedom.

The Greek word for choice is "harein" which means heresy. Yesterday's heresies are today's liberation. Yesterday people quoted the sages: "By dint of force are you born and by dint of force do you die". Today, we can choose whether to be born, when to be born and when to die. The verses in Deuteronomy reverberate with a different meaning. "I have given you life and death, the blessing and the curse, choose life that you may live, you and your seed." Choose life. That sounds easy. Life is holy. God is life, the life of the world. Listen to the insistent prayers of these Days of Awe. "Remember us to life. King who loves life and write us in the Book of Life, for Thy sake O God of life."

So holy is life in our tradition that we are told that if our life in endangered we are mandated to violate any ritual law. To endanger one's life is a graver violation than to transgress a ritual obligation.

Judaism is life intoxicated. It is not just the toast with which we cry out to each other "l'chayim -- to life,” but Jewish law goes so far as to prohibit us from testifying against ourselves in a criminal case that may result in corporal or capital punishment because life is not ours to give away. My life is God's and it belongs to God.

Choose life! Did our sages not declare in The Ethics of the Fathers, 4:22,  "One hour in this world is better than the entire world to come." One hour of repentance and good words is superior to the world to come.

Choose life, even for "chaye shaah" -- one hour of life. We read from the Codes of Hilchoth Avelim: "A dying man or woman is like a flickering candle when touched by humans it is snuffed out. Therefore the eyes of the dying are not to be closed. They may not be stirred lest it hastens their death."

Choose life! So obvious! Yet, in the hospital corridors where sons and daughters, husbands and wives, siblings, congregate: Choosing life is far from self-evident. The doctors have grimly announced that life expectancy is short, treatment is hopeless and aggressive measures will simply prolong a painful and degrading dying process. Before them lies a moribund person in a fetal position, who has gone through endless tests and tortuous treatments. This once beautiful soul, now listless, has lost her language. She has forgotten even the names of things. Her poet, Zelda, writes "How hard to part from the names of things as from the things themselves. Her ears are deaf, her mouth mute, and her face floating on the surface of the silence." She lives like a bird that cannot fly.

The television set has long been shut off. There is nothing outside that interests her. She stares at the naked four walls without a flicker of recognition. She has become Lot's wife, a silent pillar of salt.

She is locked in an island in which there is not even one dream. Dreamless, she repeats her plea: "I get no pleasure from anything. I give no pleasure to anything. What is there here for you to love?" Her eyes beg, "Do you love me so little that you would force me to live?"

The poet, Rachel spoke her heart:
"My strength gives less and less
Be good to me, be good to me
Be my narrow bridge across a sad abyss, across the sadness of my days
Be good to me, be good to a small light, be a sudden joy, be my daily bread"

I would be good to her. But what is goodness? Fed by a tube through the nose to her stomach, her bladder emptied by a catheter, sometimes vomiting from reflex movements in her throat, half alive, half dead, I can keep her going.

In the United States alone, ten thousand people are kept alive in machines. But this one is no cipher, no statistic. This gnarled, jaundiced body is my own mother. This is the woman who heard my first heartbeat, and her last heartbeat will be in my hand. "God is invisible --but my mother is God's presence." (Heschel)

The doctors have spoken not once those fateful words "We have done everything we possibly can for her. There is nothing more to be done." There are no prospects beyond a vegetative state."

Choose life! I still hear the cries of her suffering organs. Shall I allow the doctor to put another feeding tube into my mother? she who is unable to swallow on her own as a result of the stroke? Now that it is inserted and she is not recovering, dare I have it removed? When is it right to remove a respirator? When is it right to forego renal dialysis or bypass surgery? I am dizzy with semantics: voluntary active euthanasia, passive euthanasia, the right to die, the right to live, heroic measures and the quality of life. What are "heroic measures"? Having contracted bronchial pneumonia, shall I deny her antibiotics? deny her what physicians call the great friend of the terminal patient? When do I ask that the DNR - "DO NOT RESUSCITATE" sign be placed over her door?

Choose life. Dare I, her son, determine what is quality life for her and what is not? Do I exercise over-zealous medicine, practice technological brinkmanship, draw out the process of dying by unduly extended medical intervention?

And to what end? Is it for my satisfaction or hers? That she die a week or a month later -- tear off another page in the calendar, but die despondent, deformed, cursing her life?

Choose life. I wonder about the old man, zayde. Would he hesitate? or would he show me the Bible? Deuteronomy 32:39 "See I, even I am He. There is no God but Me. I kill and I make alive, I wound and I heal and there is no one who can deliver out of My hand."

There are times when I would trade positions with zayde. Take away my dreadful freedom. Free me from my terrible choices. God, you decide -- who shall live and who shall die.

The hour is too late. I live at the beginning of the 21st century, at the height of the bio-medical revolution. I have struck a Faustian bargain. I am as god. I am armed with marvelous physicians, with an arsenal of medical weapons, vaccines, insulin, laser beams, and ultra sound scans, radiation and organ transplantation, pace makers and heart-lung machines. I must choose. Not choosing is also a choice.

I can choose to prolong mother's life. Then I remember Karen Ann Quinlan, in a persistent vegetative state. Karen, who lost the cognitive part of her brain, was kept alive by a combination of intravenous feeding, respiration, renal dialysis and artificial heart. Fed through a tube, kept alive throughout the comatose period from April 1975 until her death ten years later. Who shall live and who shall die?

I would surrender my freedom and let God or the doctor or the rabbi choose. But I now see that there are no vicarious agents. This is my own blood and flesh and I myself must make the ultimate decision.

I look long at her in the hopeless twilight, she who has been pronounced terminal she contorted, unresponsive, kept alive only by the scientific genius of awesome machinery. And as I look at her, I see more than her: I see the reflection of my own self. She is the mirror of my soul. In dying, my confidence is shaken, I admit to deep fears and doubts and loneliness. I turn to the comforts of philosophy.

Philosophy is fine in cooler moments -- speaking of the soul or eternity. The philosopher Franz Rosenzweig was outraged at the vacuous smile of philosophy when it promised immortality of spirit and denied the dying body. He cried out, "What does philosophy with its chatter about the immortality of the soul know about me, me, me,: the body that wants to remain? The body's judgment is as good as the mind's and the body shrinks from annihilation."

I turn to the men of faith who, legend has it, are fearless before the Shadow of Death. J.B. Soloveitchik, the man of faith, confesses his irrational fears. "At times I am given over to panic; I am afraid of death. At other times, I am horrified by the thought of becoming, God forbid, incapacitated during my life time. I don't know what to fear, what not to fear: I am utterly confused and ignorant."

I turn to my mother. Now as I look at my mother, I know that the deep decision refers not only to her life but to my own. What do I want for myself, I who cherish life, I who so ardently believe in the sanctity of life, I who believe in the divine obligation of the doctor to intervene, to cure and to heal? What do I want for my own self?

What do I fear? Is it death I fear, or is it a pitied life? Is it death I fear or a protracted illness? Is it death I fear or that I become a secret object of loathing, a burden on my wife and on my children? In her bed what do I pray for?

What do I want? Do I want to prolong my life by placing machines, impediments upon my dying process? Of course I believe in the "sanctity of life" -- What happens to the sanctity of life when it is desecrated by meaningless suffering, embarrassment, humiliation and dehumanizing aspects created by helplessness? It is a mitzvah to prolong life, but is it a mitzvah to prolong dying?

I wonder were others before me not anguished as myself? Did they ever pray for death? their own or others? Am I alone in this conflict between the passion for life and the compassion for the dying?

I read from the 13th century Sefer Hasidim, the Book of the Pious, "One may not prolong the act of dying. If, for example, someone is dying, and nearby a woodcutter insists on chopping wood, therefore disturbing the dying person so that he cannot die, we remove the woodcutter from the vicinity of the dying person. Also, one may not place salt in the mouth of a dying person in order to prevent death from overtaking him." (Book of Pious, ed. Wistinetzki, p. 100) "We must not cry out at the time when the soul is departing in order to cause the soul to return and bear more pain." So it appears that one may be silent and not always pray for life.

I recall the wisdom of Ben Sira, in the 3rd century B.C.E., which I sometimes read at funerals "Death is better than a bitter life and eternal rest than a continual sickness."

Can a believing Jew pray for his own death or for the death of another? I find in the Talmud Ketuboth 104a, a passage in which Judah the Prince is dying. His disciples have decreed a public fast and offered a public prayer to prolong his life. His trusted maid, known for her sagacity and piety, recognizes that Rabbi Judah was approaching his death and that he was in great pain. She runs to the roof and throws a jar from the roof to distract the disciples from praying. This, the Talmud relates approvingly enabled Rabbi Judah's soul to depart in peace.

There are times writes Rabbi Nissim of Gerondi (13th century) that it is commendable to pray for the death of the patient.

I read from the Codes Shulchun Aruch (Yoreh Deah 339): "It is permissible to stop the clattering noises or the pounding of the wood near the patient because the noise delays the soul's departure. It is permitted to remove an impediment to death."

I look for further guidance in the rabbinic responsa. They are as varied as my own. But what can I reasonably expect of Rabbis who lived long before the bio-medical revolution, before MRI's, EEG's, before catheters and chemotherapies and intubations, who measured death by placing a feather against the nostril? The human condition today is so different from that of older times. Other Rabbis wiser than I that I consult offer so many different interpretations. Once again I recognize that in the end it is I who must choose, even to choose which rabbi to listen to. Even not choosing is to make a choice. It is a monumental truth an existential truth. No one can live for me. No one can die for me. No one can suffer for me. No one can choose for me. I am forced to freedom.

Moral responsibility cannot be placed at the doorstep of God. Ultimately, it is I, not the physician, the attorney or the rabbi who decides. They should be consulted but the ultimate decision -- when and what kind of measure to use, whether to make her life longer or to prolong her death, whether to hold on or to let go, all these things depend on me and my family.

People come to my study with life and death questions. I feel for those who come to me, hoping that I can open the book, and find the unequivocal answer. They want authoritarian, unambiguous answers. I cannot give it.

There are no surrogates for me and none for you. No one can tell you even whether to speak the unvarnished truth to the loved one who asks "Tell me do I have cancer?"

Even here the rabbinic responsa are divided. For some, telling the truth is imperative. Does the patient not have the right to know and to act on that knowledge? But for others, the truth should be withheld lest it cause the patient a mental or physical set-back, it must be withheld. I must conjure the disposition of the person, whether the truth will crush her hope in recovery. The world of simple absolutes crumbles. Sometimes a lie is no transgression. We read in the Book of Kings that when the messenger of the King Ben Haddad consulted the prophet, Elisha, the prophet told him: "Tell the King he will surely live." Then he added "although I know that he will surely die." There is no universal categorical imperative that one must act lovingly, wisely, personally. For this one must know the patient's heart. One must know the depth of one's own heart.

People come to me in the eleventh hour. There is little time for deliberation. Decisions must be made. They are forced options. The wisdom of the Midrash Ecclesiastes Rabbah 8:8 puts it wryly "None can say to the Angel of Death 'wait till I make up my accounts'." To you who are in good health, to you who enjoy lucidity: I would plead in the ???? of the ????, "Hayom, hayom, hayom,” not tomorrow. The decisions should not come at the last moment. The decision must be made now while we are alive and clear-headed. Now is the time that the family must open up to each other. Now is no time for squeamish avoidance of the unpleasant. No time for the denial of silence. Now is the time for honest conversation, for real dialogue. Do not procrastinate. Now is the time to draw close to the family!

The family is not simply an economic unit. This is mishpochah, the intimate sacred center of life and death. Now is the time for anticipatory wisdom to learn the heart of the stranger in each other and the stranger in me.

Now is the time for the family to join together and reach agreement.

Do we understand each other, do we understand our wishes and wills? The decision, the forethought must take place now, while our minds are in order, while we have time to weigh consequences. Do not postpone the meeting.

I have witnessed far too many family accusations, recriminations and guilt trail our lives because they do not know the will of the dying. Tragically perverse quarrels swirl around the sibling claims as to who loves papa most, whether the one would "turn off the switch" is callous son or the one who refuses to act is the compassionate daughter. However, the act is done, the scars of guilt remain forever. That is clearly furthest from the will of the dying and assuredly not in the interest of the family.

Now is the time to rehearse for that which is inevitable. More than medicine is involved here, more than technical and technological decisions. We are more than machines. We are fragile human beings. We must not be ignored. The dying fear to be abandoned, fear to be ignored, the dying fear helplessness. They deserve the attention of our love. Now is the time to pay them attention. Listen carefully to the whispers of my philosophy. What is valuable to them? what do they find worth while in living? what do they mean by the sanctity of life, or the quality of life? Listening is a mark of respect. Death belongs to the dying and to those who love them. My death belongs to me. Open my heart to its secret murmurings.

Blessed is scientific research. I praise the miraculous instruments, the sophisticated medical machinery. But machinery must not control us. Because it can breathe for us, make our hearts beat, empty our bladder, keep us technically alive, robotize us, does not mean the invention should be used. If we allow technology to decide for us, we make of machinery an idol, the work of men's hands. It is as the Psalmist wrote and we recite in the Hallel:

"They have mouths, but they speak not
Eyes have they, but they see not
They have ears, but they hear not
Noses have they, but they inhale not
They have hands but they touch not
Feet have they, but they walk not
Neither can they make sounds with their throats
Whoever makes them shall become like them

"Can" does not mean "ought". Because technology "Can" does not mean that we "Ought". We must think beyond the machine. We must think in terms of divinely human purpose.

The decision is profoundly personal. It cannot be generalized. Not for everyone living till the last possible breath. There are no absolutes here. Not for everyone life over everything. For some, pain may justify choosing death. For others, Nietzsche's insight reveals: He who has a "why" to live for can suffer any "what" may apply. Some may prefer pain to death, even as in Aeschylus' Agamemnon: "He who learns must suffer. And even in our sleep, pain that cannot forget, falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God."

Rabbi Menachem Ha-Meiri would choose to extend life in suffering even for one hour because in that hour he may find time to repent. Franz Rosenzweig, the philosopher, lived eight years with paralysis, and managed to write books.

But they are not us. Facing death, philosophy, theology, values take on existential urgency.

For my own sake and for those I love, I owe it to them to make my desires known. Would I leave my family alone in the dark corridors to speculate about how I would die? If I would not want heroic measures, if I do not want to linger on with paralysis, without speech, or to breathe artificially for years, I must make my decision clear to others. I must have the courage to anticipate because once I am hooked up to life support, no document can readily unhook me. I cannot anticipate every event.

But I must decide in the midst of uncertainty. But uncertain we must choose wisely. Robert Frost summed it up: "True wisdom is the ability to act when it is necessary on the basis of incomplete information." We cannot demand of the physician or ourselves omniscience. We do not and cannot know the outcome. Still we must choose with the best information at hand and without guilt.

Give me your hand with wisdom. I need from you the art of holding on and letting each other go. Especially letting go. "For holding on comes easily. We do not need to learn it." (Rilke)

When the shadow of the Angel of Death appears, and like my ancestor, I will wrestle him to the ground, squeeze out of him a new name: Israel "For you have struggled with God and with man and you have prevailed." But when the messenger of Death cannot be denied, I am prepared to accept the message. I am prepared to accept it not as a defeat but as a summation, not as a punishment but as a conclusion.

I have raised these matters not to disturb your peace but to urge you to take your life into your hands. For facing death, will give us a deeper grasp on life. Once we have settled the future, we can life more freely in the present. There are multiple questions that we have --legal, halachic, moral, medical -- and for this reason I have called together a panel of experienced, thoughtful persons to answer your questions and mine, to help you and me make wise and moral decisions. On Sunday, October 15, at 10:00 AM, we will together examine steps that are legally and morally important to execute: a variety of living wills, durable medical power of attorneys, Jewish wills. I want you to be there.

The Talmud talks about a good death and a bad death. There is a healthy way to live and there is a healthy way to deal with death, to see death as part of life and as a friend. In one of the most arresting statements on this subject, the Jewish philosopher, Franz Rosenzweig wrote "Health experiences even death at the right time. It is good friends with him and knows that when he comes he will remove the rigid mask and take the flickering torch from the hands of the frightened, weary, disappointed brother Life. He'll dash it on the ground and extinguish it, and then under skies that flame up for the first time, he'll enfold the swooning one in his arms and only then when life has closed its eloquent lips, he'll open his eternally silent mouth and say 'Do you recognize me? I am your brother.'"

The sage said: "Would you not die? Then die, that you shall live." We need not die a thousand deaths of ignorance. We need to die and to live with the dignity of courage and wisdom. Living we die. Dying we live. It is given by God into our hands to choose.

Every day and night throughout the High Holydays the tradition singles out one Psalm, Psalm 27. "The Lord is my light and my salvation -- whom shall I fear? The Lord is the stronghold of my life -- of whom shall I be afraid? Even if my father and mother forsake me, the Lord will take me under His care...I have faith that I shall yet see the goodness of the Lord in the land of the living. Hope in the Lord: Be strong and let your heart take courage. Hope in the Lord."


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Sat, June 22 2024 16 Sivan 5784