The Right to Die
Bernard Bard and Joseph Fletcher
The Atlantic Monthly, 221 (1968 Apr), p. 59-64.
|Reprinted with the permission of the Editor|
When life "is not good, it deserves neither protection nor preservation." That is the proposition examined in the following pages by a grieving father whose son was born a mongoloid, and a distinguished moral philosopher who attempts to put the issue into ethical perspective. Mr. Bard is a veteran education writer for the New York Post and author of THE SCHOOL LUNCHROOM: TIME OF TRIAL. Professor Fletcher, author of MORAL RESPONSIBILITY: SITUATION ETHICS AT WORK and other books, teaches pastoral theology and Christian ethics at the Episcopal Theological School in Cambridge, Massachusetts.
My son, Philip, was born at 11:20 A.M. on December 2, 1962, at Booth Memorial Hospital, Flushing, New York. The pediatrician, Dr. F., a youngish man given to bow ties, met me in the corridor of the maternity floor. It was a boy, five pounds, thirteen ounces, he said, but added: "I'm not totally satisfied."
The vital organs were functioning normally, said the doctor, but there was something about the facial features, the extra-wide bridge between the eyes, the poor muscle tone, the weakness of the stomach muscles when the infant cried that showed abnormality.
"This is something we'll have to watch carefully, to see how the baby develops in the next twenty-four hours, or three to four days," said Dr. F. "But for the moment, the outlook is for an individual without a long life-span and not great mental development in the years ahead. Please call me by tomorrow."
My wife was still under anesthesia. I went out to buy flowers, and was in her room when she awakened. "How is the baby?" were her first words. I said he was fine. She smiled and went back to sleep.
I visited the nursery that afternoon and again that night. My baby was in a warmer. The nurse on duty assured me it was not an incubator, just a temperature-control device. I had been worried because Philip was premature, born four weeks ahead of schedule. But the nurse told me his weight was good. He looked beautiful. His face seemed round and healthy-looking. I detected none of the unusual facial configurations Dr. F. had mentioned. I began to grope for reassurance. I stopped another nurse to ask how my son appeared to her. "Fine," she said. "Don't let the warmer worry you."
At three the next day, I sat in Dr. F.'s office, on a residential side street a mile from the hospital. He closed the door, and began, quietly, to recite some of his observations. The ears were set back too far on the head. The hands and feet were stubbier than normal. There was an in-turning of the final joint of the pinky fingers. There was a fold over each eyelid. There was a scruff of fat at the back of the neck. The hands and feet flexed back too far under pressure, but did not reflex. "The child is almost double-jointed." And the tongue was too large for the mouth.
The features and symptoms suggested hyper-telorism, a word I immediately recognized as associated with mental retardation. The word for the infant's overall appearance and condition, said Dr. F., was mongolism. "All signs point to it." But still Dr. F. did not want to make his diagnosis final. He assured me tests could be taken, hip X rays and chromosome counts. And he could consult with the chief of pediatrics at the hospital. "How sure are you?" I asked. "Is there perhaps a fifty-fifty chance you are wrong?"
No, said Dr. F., the odds were more likely ninety to ten that he was right. Few such children, he continued, live beyond the teens. Those that do survive into adulthood are incapable of reproduction. The outlook for "normal" mental development was about nil, he said, and only fifty-fifty that the child would be able to care for his own bodily functions, and not much more.
"Parents make either one of two decisions," said Dr. F. "Either they take the child home, and give him as much care as possible. Or, where there is another child at home, as in your case, the decision is sometimes made to institutionalize the mongolian child. Some parents take the child home for several months, or years, and then place it in a nursing home or training school."
That night I meet Dr. L., the chief pediatrician at Booth. He emerged from the nursery, where he had just concluded his examination, and was still wearing his surgical mask and gown. "Wait till I shed this," he said. "I'll meet you in the father's waiting room."
There was no doubt at all about the diagnosis, said Dr. L. No tests were necessary. All the classic symptoms were present. The child, he said, would be vulnerable to heart trouble "of a severe sort," perhaps at age one or two. He would be peculiarly susceptible to digestive ailments and respiratory troubles. Life would, according to medical experience, be short. Mental development would be arrested at the age level of two or three.
Dr. L. said many parents institutionalize mongolian children, "particularly when there is another child at home, a normal child." But he declined firmly to offer any advice.
Two days after Philip was born, I gave Peggy the entire story. Until then she had only known there were symptoms that troubled the doctors. She tried to nurse, but the baby was too weak. Dr. F. ordered Philip be given a bottle in the nursery. I told my wife that I felt it best to have the baby cared for away from home, that this was a decision the doctors had not attempted to influence in any way, but one in which they concurred as the best. Dr. P. said, "He will grow up among children like himself, not aware that he is different."
In point of fact, the physicians I consulted said it was better to experience heartache now than to know a cumulative, greater anguish later on. To take the child home, one doctor said, would trap the family in "an irreversible situation." Peggy agreed, and said weakly: Take me home.
Through friends, I learned in the next few days of a private sanitarium in Westchester County, said to be rated one of the best in the state. I called and found my son could be accepted immediately. The institution, I was told, was run "as a hobby" by a pediatrician with a flourishing practice with normal children.
He was a specialist in mentally retarded children. The price, to families receiving welfare assistance, was $160 a month. I was one of these. My income, in the middle range, had forced me to apply to the Nassau County Department of Public Welfare for aid in meeting the costs of institutional care.
Now, among close friends, I began to tell our story. I learned that there are such tragedies in many families. The sister of a neighbor, I learned, cares at home for a mongolian boy of fifteen. He is virtually helpless, still wears diapers. The mother has suffered three miscarriages because of the strain of lifting him.
A friend from my high school days told me of a cousin with mongolism, a woman of thirty-eight with the mind of a four-year-old. "I see her once in a while at a family social function," he said. "It's impossible to exchange more than a few words with her. Her mother's greatest fear is that she will be left alone, with no one to look after her, after the mother dies." The parents, I was told, were determined to have no more children for fear mongolism might strike again.
Another friend told of another mongolian child being raised at home. The mother has said openly: "I want to outlive him by just one day, so that I can know a single day of freedom." The child is in his teens. He often wanders away and gets lost in the neighborhood. The police bring him home.
On the weekend following Philip's birth, I visited the sanitarium which had been recommended to me. It was a large old mansion, constructed of brown and buff-colored stones. The premises looked solid, formidable, and cold; the sign was turn-of-the-century; there was a small sign over the front entrance. The neighborhood was neat and partly residential.
Mrs. C., the chief nurse, gave me the admissions forms. I paused, conscious of her watchful eyes, as I answered each question - father's name, mother's name, age of infant, weight, and so on. My feelings of guilt were overpowering. I felt I was abandoning my child. My mind returned to the hospital nursery. The other infants now there would come into homes made ready to receive them. My child was forsaken.
"Would you like to look around?" asked Mrs. C. We went first to a room containing the newborn. Nine infants were in cribs, some asleep. Most were awake. There was no whimper, no cry. The babies were almost motionless. They lay as if in a trance. Their faces showed no expressions. Most showed the telltale facial characteristics of mongolism - eyes widely spaced, slight deformities of the ears, round, fat cheeks.
We passed down a corridor. Mrs. G. told me to wait while she closed a door. "The children in there have oversized heads," she said. "It might disturb you. We keep them together." On we went, into other rooms containing other children - mongoloids, brain-damaged; some were blind in addition to being mentally retarded. Some of the children seemed too large to be languishing helplessly in a crib; others seemed pitifully small.
In one room was a girl of, four, wearing a red playsuit." She lay on her back in the crib, staring; blankly into space or at the ceiling. She was the age of my older son, Stephen, but half his size. "Mongolian," said Mrs. C. She affectionately tickled the child's stomach to bring on a playful mood. But there was no response, no laughter, no smile. The face was void. For my child, I told myself, there would be a crib here. It was a thought beyond total understanding or complete acceptance.
In her office, Mrs. C. listened as I told her of my feelings. It was not for this, I said, that we wanted another baby. We would consider ourselves blessed, I went on, if there had been a miscarriage or a blue baby rather than this. Mrs. C. understood. I asked her how mongoloid children fared. While they live, she said, "they haven't a care in the world - it's the parents who suffer." Heart failure kills many the first year, she said, but with new drugs more and more survive that period. If they do, she said, some mongoloid children live for years.
On the trip home, I prayed for my child's death, cursing and damning myself as I did.
I went back to see Dr. F., our pediatrician, who was pleased with the sanitarium and the speed with which arrangements were completed. I raised with him the question of euthanasia in those instances where neurological damage is so severe that no matter how long a child may live, he will be little more than a body - unable to care for the most elemental needs, totally dependent on others' for survival.
There was no shock on his face. Mongolism, said Dr. F., was incurable and the cause, usually, of gross retardation. If euthanasia were legal and professionally ethical, he said he would be more inclined to perform it on my child than on children: afflicted with other diseases that were on the threshold of new discoveries. But for mongolism, he said, there was no cure and none on the horizon. Research was concentrating, he said, on birth defects so; as to eliminate the prenatal causes of mongolism.
While medicine could not take Philip's life, said Dr. F., nothing would be done to prolong .it. No operations would be performed; no miracle drugs would be administered. "Medical emergencies will be met, such as sudden bleeding or choking,"' said Dr. F., "and the child will be kept warm, fed, and sheltered. Nothing more."
I returned to the sanitarium in a day or two to meet Dr. K., the director. His offices were separated from the institution he ran by a narrow driveway. On one side of the driveway was the sanitarium, with its population of retarded children. On the other, was a pediatrician's office, with baby carriages parked at the door. Cutouts of clowns and Humpty-Dumpties adorned the bright yellow walls of Dr. K.'s waiting room. There was laughter, and an occasional shriek, and mothers chased after children intent on mild havoc. At a small table, a group of children read aloud picture book.
Dr. K. is a man in his fifties. He has been a specialist in mental retardation among children for thirty years. He has examined every mongoloid child in Westchester County, it is said, either to confirm the diagnosis of other physicians or to contradict them. He spoke of mongolism in scientific terms, the papers he had written on it, the statistics compiled. Nothing, he said, had been discovered concerning precisely what goes wrong during pregnancy to cause the condition, by the presence of 47 chromosomes, one more than the normal human complement of 46. The research, he said, was attempting to find what body processes within the mother produce the extra chromosome.
I told Dr. K. that I wanted nothing done to extend my son's hold on life artificially. He assured me he understood. The sanitarium, he said contains no oxygen. The children are given no inoculations against childhood diseases, unless parents insist. "There are churches on all sides of me," he said. "Every one of these ministers agrees with me that it would not be moral, or serving God's will, to prolong these lives."
At the suggestion of an official in the welfare department, a social caseworker took Philip to the sanitarium next day. I had brought her diapers, nightgowns, blankets, bunting, and bottles for his formula. A few hours after Philip's arrival, Dr. K. called to tell me he had died. "Heart failure and jaundice," he said. "Consider it a blessing." And I remembered what he had told me our first meeting: "Some parents regularly visit their children here. They waste their lives trying to expunge a feeling of guilt that should not be there, instead of devoting themselves to their normal children. It is for them that they must and should live."
I did not know my son. I do not know his thousands of brothers and sisters, of whom it has been written, "Oh, what a mortal pity He was ever born," and I do not know the parents of these children. I do not speak for them, just for myself and perhaps for Philip. I believe that it is time for a sane and civilized and humane approach to euthanasia.
I do not know how it should be practiced, or what committee should have a voice in the decisions, or what pill or injection might best be employed. I do know that there are thousands of children on this earth who should never have been born. Their lives are a blank. They do not play; they do not read; they do not grow; they do not live or love. Their life is without meaning to themselves, and an agony to their families.
Bernard Bard is a loving man. He is not a vitalist — which is the label philosophers attach to those who make an idol of life. To them life is the highest good, regardless of the situation. But he loves people too much to absolutize mere biological process. He cares too much for human happiness and peace and kindness and loving concern to subordinate every other consideration to merely keeping breathing a sadly non- or un- or sub- human creature.
I agree with Mr. Bard that we ought to be able to do something that he calls "a sane and civilized and humane approach to euthanasia." There is no good reason why he and Mrs. Bard and Stephen and a host of friends and medical and paramedical helpers should quit in dumb resignation to that mysterious, disastrous forty-seventh chromosome.
Out of respect for the Mongols, by the way, and to keep the peace with my own son, who is a specialist historian of Central Asia, I prefer to speak of this pathology as an embryonic anomaly or, specifically, Down's syndrome.
Dr. F. has to act within the law, at least as far as policy goes. Nobody knows for sure what doctors do in practice, sometimes. For example, to stop the pain of terminal patients they sometimes give them rapidly increased doses of morphine in order t reach the fatal, toxic level. And at the other end of the life spiral, at delivery, they often refrain from respirating "monsters." But our statute and common law - that is, our official morality - is thoroughly idolatrous and vitalistic. It prohibits our ever ending a life directly, except when necessary in defense of one's own life.
In short, the official morality and conventional wisdom are not only vitalistic and idolatrous; they are selfishly so. "All life is sacred, and my life most of all."
It is the sacrosanct notion of life which is challenged by Bernard Bard. He is saying that we are not helpless and hopeless in the face of adversity and suffering. He rejects fatalism. Fatalism attributes cosmic evil (evil not due to human cause or choice) to God, perhaps, or nature, or chance, or to some weird combination of all three, and then it decides that we ought not to do anything about it even if and when we could!
Look carefully at what Dr. K. told him. The "sanitarium" where Philip was taken immediately from the hospital only cares for a Down's case physically, and only in a minimum way at that. They keep no oxygen, give no inoculations against disease. Nothing is done to keep death away. On the contrary, it is welcomed as a friend. Kant once said that if we will the end we will the means, and morally surely he was right. The official morality in this matter is plainly of the primitive taboo order. "Life is untouchable; don't dare the lightning of the gods." This is not rational or responsible.
This policy we can call indirect euthanasia, achieved by deliberately omitting to do what is possible to preserve life, thus bringing death about left-handedly. It is really dys-thanasia, not euthanasia; a bad death, ugly and prolonged, rather than a good death, merciful and quick. One morality lets death drag out, willy-nilly; the other shortens it by a morally authentic decision.
Dr. F.'s professed policy, in which death is desired but not devised, is public simply because it has general acceptance. To give him the credit due, Dr. F. did say to Mr. Bard that if euthanasia were legal, he would be inclined to end the lives of grossly retarded infants like Philip. But behind the reigning official morality lurks a religious or taboo morality. In formal teaching Roman Catholics, Protestants, and Jews, at least as far as their moral theologians and ethicists can speak for them, are agreed that we are not obliged in conscience to preserve a life, just so long as we don't do anything directly to end it. Pope Pius XII, in saying so in 1957, added that we may never choose to let sufferers "go" except when extraordinary means would be required to keep them alive. Doctors and moralists, however, cannot agree about what is extraordinary, and even if they could, it would become ordinary very quickly because of the rapid advances of medical care.
Whether at the start of life, as with fetal and neonatal defects, or later on, in terminal and senile illnesses, the moral problem is essentially the same; if we can justify wanting death to come, is it ethical to sit by waiting fatalistically for whatever blind, brute nature happens to "do" about it?
There are some who object that "the end does not justify the means," This is an old bromide, and basically quite an irrational one. Nothing at all can justify what we do, or make good sense of it, except the goal or purpose which gives an act its character as a "means," or to put it differently, makes it meaningful. Otherwise any act would be random, pointless, non-sense. The only serious ethical question about means and ends is, "Is the flame worth the candle?" Is the cost of the necessary means proportionate to the value of the end sought? Is the payoff worth the input? This is a decision which depends on the facts in each situation; there are no general formulas, no absolute or universal requirements and prohibitions. In dealing with Down's cases, it is obvious that the end everybody wants is death. What is at issue is the means. Shall it be indirect, by omission, as in the official policy, just letting it all hang on chance? Or shall it be direct, by commission, resulting from responsible choice?
What Mr. Bard is pleading for, on behalf of millions of blameless and miserable people, is direct euthanasia. I almost said "honest" or "straightforward" euthanasia. Bard's belief is that it is dishonest or phony to will the end but not the means. I agree with him. Absolute taboos, with their underlying mystique about life, make a farce of human freedom.
All such taboos cut the ground out from under morality because nothing we do lies in the moral order if it is not humanly chosen. The atom bomb dropped on Hiroshima in 1945 (tragic and debatable as it was) was morally significant, but the Krakatoa volcanic earthquake off Sumatra in 1883 wasn't. If Philip's life, such as it was, had been brought mercifully to a close, that would have had ethical value; but with its sudden end by "heart failure and jaundice," neither his life nor his death had any moral meaning whatsoever.
Pause for a moment to consider preventive abortion, of the kind that so many women underwent during the thalidomide snafu a few years ago. There is no reason in the world (other than the vitalist mystique in its extreme form) why a pregnancy should not be stopped at once if there is a solid ground to believe or even to fear that it will result in a mentally or physically deformed child.
This is, in a manner of speaking fetal euthanasia. Mrs. Finkbine was on a morally sound course when she went to Sweden for an abortion after an Arizona court found that our American laws are too vitalistic to allow her to make a morally responsible decision.
Now, then, if through ignorance or neglect or sheer chance (like the forty-seventh chromosome) the damage has not been ended prenatally, why should it not be ended neonatally? To have given birth innocently to a Down's case, when we would not have done so if we had known the truth, does not of itself justify our extending the tragedy By stubbornly persisting we only compound the evil; we make ourselves "accessories" after the fact of a monstrous accident. We cannot be blamed for what we did not know, but we can be blamed when we do know.
The only difference between the fetus and the infant is that the infant breathes with its lungs. Does this make any significant difference morally or from the point of view of values? Surely not. Life and human being is a process, not an event; a continuum, not an episode. It is purely superstitious to assert that life "occurs" at fertilization or nidation or embryonic formation or fetal animation (movement) or birth or at school or voting age.
To be a human is to be self-aware, consciously related to others, capable of rationality in a measure at least sufficient to support some initiative. When these things are absent, or cannot ever come to be, there is neither a potential nor an actual person. To be a person is a lot more than just to be alive -as any student of the human struggle for maturity and well-being knows perfectly well. The fact that a biological organism functions biologically does not mean that it is a human being. There is a difference between a man and a brute. Even if it is a difference only of degree, it is still a difference.
There are many variants or variables situationally, of course. What has been said here is directed only against absolute prohibitions of euthanasia, maintained legalistically and regardless of relative circumstances. On the other hand, however, there is no logic in slipping into the opposite error and absurdity - insisting that euthanasia is always the right thing to do in all cases of retardation! This would simply be a reverse legalism. There is, on the contrary, a strong case to be made for the medical distinctions between idiots, cretins, and morons.
The Kennedy Foundation will, no doubt help us eventually to correct the condition of some retardates. Whether we ought to do so or not should depend on each particular situation. Neonatal intensive-care units in maternity hospitals are having increasing success in, overcoming hypoxia (lack of oxygen), hypoglycemia (lack of sugar), bilirubin (a blood chemical causing jaundice and anemia), and infections of the central nervous system. But the core of the moral problem is still the freedom of people to choose, to be responsible, in every situation.
How strange and contradictory it is that people should deliberately assume the responsibility to initiate a life, and to control its creation contraceptively, but still fail or refuse to terminate it, no matter what the actual situation is. Some vitalists, the archaically intransigent ones, flatly refuse to terminate reproductive failures either before or after birth, and in a way perhaps this kind of whole-hog opposition makes more sense than a willingness to do it before respiration (abortion) but not afterward (euthanasia); The archaists at least have a consistent and radical fatalism.
People in the Bards' situation have no reason to feel guilty about putting a Down's syndrome baby away, whether it's "put away" in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad; yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down's is not a person. There is no cause for remorse, even though, certainly, there is for regret. Guilt over a decision to end an idiocy would be a false guilt, and probably unconsciously a form of psychic masochism.
There is far more reason for real guilt in keeping alive a Down's or other kind of idiot, out of a false idea of obligation or duty, while at the same time feeling no obligation at all to save that money and emotion for a living, learning child. The learning child might be a retarded one with a viable potential, or just an orphan in need of adoption.
To "feel" obligation to prolong "life" in the Down's case while failing utterly to see or accept any responsibility in the promising child's case is moral confusion worse confounded. From a human or moral point of view it is irresponsible.
Theologically oriented people often get the idea that life is God's alone, to deal with as He wills or pleases. (They stick to this idea even if they practice birth control! The really consistent vitalists are across the board opposed equally to contraception, abortion, sterilization, euthanasia - that is, to any form of human initiative and responsibility whatsoever.) One moralist has said that euthanasia is a "destruction of the temple of God and a violation of the property rights of Jesus Christ." But this divine-monopoly theory logically militates against medicine itself, which is trying to lengthen life and defend it from "nature's" threats.
The belief that God is at work directly or indirectly in all natural phenomena is a form of animism or simple pantheism. If we took it really seriously, all science, including medicine, would die away because we would be afraid to "dissect God" or tamper with His activity. Such beliefs are a hopelessly primitive kind of God-thought and God-talk, but they hang on long after theologians generally have bid them good-bye.
The notion that life is sacrosanct is actually a Hindu idea, although Hindus practice things like suttee. It is not Christian or biblical. If it were, all heroism and martyrdom would be wrong, to say nothing of carnivorous diet, capital punishment, and warfare. The sanctity (what makes it precious) is not in life itself, intrinsically; it is only extrinsic and bonum per accident, ex casu - according to the situation. Compared to some things, the taking of life is a small evil and compared to some things, the loss of life is a small evil. Death is not always an enemy; it can sometimes be a friend and servant.
Life is sometimes good, and death is sometimes good. Life is no more a good in itself than any other value is. It is good, when and if it is good, because of circumstances, because of the context. When it is not good, it deserves neither protection nor preservation. Our present laws about "elective death" are not civilized. It is high time we had some constructive guidance, perhaps from a model code committee of the American Law Institute. Let the law favor living, not mere life.