Neonatal euthanasia

Gonzalo Herranz, department of Bioethics, University of Navarra
class in the Postgraduate Course of University Specialist in Bioethics
Educational Promotion Service, University of Murcia, February 9, 1995.

Index

Historical perspective

2. The status, today

The Leicester trial

The other episode, a article by Peter Singer

3. The inevitable continuity between abortion and neonatal euthanasia

Biased decisions

4. What to do

Bibliography

Historical perspective

This historical perspective, from yesterday to today, will serve to point out many things.

Too many things in our time to refer to remote antecedents.

It is worthwhile, however, to draw in a few features, ideas and facts of the past, to understand how we are under the threat of regression to culturally inferior times.

A verse by Eliot sums it all up very well: a moment of weakness, a discouragement that makes us capitulate, strips us in an instant of what took centuries to conquer and will take centuries to recover.

The ancient world was not very sympathetic to the weak. There were not, in pre-Christian societies, many of the fundamental rights that we now enjoy. The child was not, in general, supposed to be endowed with a peculiar right to life, to be fed and cared for. No one had even considered the idea of whether all human beings possess intrinsic rights, an ontological dignity, independent of social status, legal rank, sex, age, virtue, or physical prowess.

A historian summarizes status as follows: "Almost universally in classical antiquity, it was taken for granted that, by the fact of being born, the child had no intrinsic right to life. What counted was that it was taken in, adopted, in a family or in any other social institution. Both Plato and Aristotle, as well as the Epicureans and the Stoics, and perhaps also Plotinus, accepted the withdrawal of children for eugenic or purely economic reasons".

There were cultures, such as Sparta, and perhaps primitive Rome, in which the newborns, property of the state, were selected at birth. Plutarch tells in the Life of Lycurgus that, if "the elders found them well conformed and strong, they ordered the parents to raise them. But if they were born deformed or weak then they would throw them into a precipice at the foot of Mount Taigeto, convinced that the life of one whom nature had not equipped well from the very beginning with health and strength, was of no use either to itself or to the state."

However, in Israel, as well as among the Germans, the elimination of defective newborns was considered a serious crime, a violation of the law. The penetration of Christianity into ancient society and with it the idea that all men are children of God, imago Dei, mysteriously made in his image and likeness, brought with it, among many other things, the disappearance of abortion, infanticide and the withdrawal of children. Since then, even if some people had doubts as to whether some extremely deformed monsters were real human beings, in whom it was very difficult to discern the image of God, the Western tradition accepted the belief, explicit in the Christian teaching , that every newborn child must be protected, cared for and loved.

Things remained that way, at least in theory, until the experience of Nazi Germany and its massive euthanasia operation: brain-damaged and malformed neonates were selectively eliminated with the partnership of pediatricians and obstetricians. It all started with the acceptance among the ruling class that there are lives devoid of vital value, a notion that is connatural to the fallacy that there is also a master race. On this cultural humus, compassion acted as a trigger for the Gnadentod, the compassionate death. It was enough for a woman, the mother of a deformed infant, to write a moving letter to Hitler. Hitler put the matter in the hands of his physician staff, Dr. Brandt, who authorized one of his collaborators to perform euthanasia. Everything that followed, the massive elimination of the handicapped and later the Holocaust of Jews, Gypsies and Poles, is well known.

The charitable operation of financial aid to the life devoid of vital value, so called the Nazi euthanasia operation, received, 50 years ago, the firm and unappealable condemnation of the Nuremberg Tribunal of crimes against humanity. Thus closed that dark chapter in the history of medicine.

2. The status, today

The status as it is being experienced today

How things have changed from 1945 to 1995! It is true, once again, that more things have happened in these 50 years than in all the previous time. The succumbing of many to the temptation of utilitarianism is causing us to lose in a moment what took centuries to acquire and may take centuries to recover: respect for the weak.

It is not easy to pinpoint the key milestones of first hinting at, and then instituting, neonatal euthanasia as internship acceptable in a physician's conduct manager.

There were, in the 1960s, very dramatic episodes of neonatal euthanasia among focomelics, victims of thalidomide. In the 1970s, especially in the United Kingdom, there was a long dispute among pediatric surgeons about the limits between treating and abandoning children with cystic spina bifida or advanced hydrocephalus. There was unambiguous talk of euthanizing children who, unable to benefit from corrective surgery, were going to have a life of very poor quality leave . The controversies between the Sheffield surgeons Lorber and Zachary were very harsh. Influential articles were then published, signed by pediatricians and pediatric surgeons or intensivists (Shaw, Duff, Campbell) justifying euthanasia as a compassionate and proportionate treatment for the present suffering and the poor quality of future life of severely malformed neonates.

Many things have happened in these last decades. I will refer in some detail to just two episodes that seem significant to me.

The Leicester trial

The first is the trial held in Leicester in August 1981 against Dr. Leonard Arthur, a distinguished pediatrician who accepted parental rejection of a Down syndrome neonate. I remember it well: I followed it day by day. In March 1982, I published an extensive report in the journal NT, one of my first adventures in the field of medical ethics, when I had not yet decided to dedicate myself full-time to Medical Ethics. The case was very important. For example, Raanan Gillon's book, Philosophical Medical Ethics, is intended to be simply a commentary on this case.

Dr. Arthur instructed his nurses to apply only nursing care to little John Pearson. This care consisted of giving, as the child's sedation required, a bottle of a solution of dihydrocodeine phosphate.

The child died at 69 hours. Complaint by a nurse, police intervention. Autopsy with no alterations other than the morphological alterations of simple Down's, no visceral malformations, and intoxication by dihydrocodeine phosphate: a blood level three times higher than that which was sufficient to kill an adult.

In my opinion, the trial was an amazing pro-neonatal euthanasia propaganda operation. Nothing else was being talked about that summer in England. Dr. Arthur's defense was entrusted to the best lawyers, paid for by the BMA, as were the expenses of experts from America and Scandinavia. Surveys were published: the opinion of parents appeared to be split down the middle as to whether euthanasia for newborns was acceptable. Many physicians supported their colleague. 800 nurses signed up to EXIT, the UK's then pro-euthanasia society. LIFE, the British pro-life association , tried to make its voice heard, but was not given sufficient means.

It is not possible to summarize everything that was said at the time, both in and out of court. The initial turn went to the defense experts. They were at ease, praising Dr. Arthur's conduct, his skill and dignity, his mixture of science and compassion, his sincerity and moral courage. A true pediatrician," said one of the witnesses, "is one whose patient is not the child, but the family. He does not close his eyes to the problem of a painful and unhappy life, which makes the life of others unhappy. He takes pity on the child and the parents. He does not wash his hands like Caiaphas, he does not pass over the suffering of others like the priest and the scribe in the Gospel parable: he bends down like a Good Samaritan before the suffering of that family and, at the risk of his prestige and security, knowing that he is spied on by pro-life activists, he frees the child and the family from the unbearable burden of a useless, frustrating and suffering life.

When the defense witnesses had finished their turn, before the prosecution witnesses could act, with public opinion psychologically manipulated by arguments such as those I have just mentioned, the trial came to an apparently premature but calculated end: a pathologist who had performed the autopsy was presented to the judge, urged by the professional establishment, and provided some details that had been overlooked (slight histological alterations in heart and brain, and an incipient picture of bronchopneumonia, which in his opinion, indicated that the child had not died necessarily and exclusively as a result of withdrawal and pharmacological treatment, but that there were some signs of inflammation in the lungs that there were natural causes that could have contributed to the death of the neonate. The murder charge was quashed, and the trial terminated. Verdict of innocence. Shouts of jubilation at conference room of the trial, general relief.

The UK Attorney General said the matter was clear: he would not in future accept complaints from pro-lifers against parents and doctors who applied neonatal euthanasia to their malformed children.

Social resistance was defeated. Only the voice of the Catholic Hierarchy, of the Orthodox Jews, of some Anglicans (Malcolm Muggeridge, not yet converted to Catholicism) reminded that it is not licit to kill. "The Catholic Church teaches, on rational and religious instructions , that every innocent human being has a fundamental right to life. This right is totally independent of the wishes of others, or the judgment of society. It does not matter whether the innocent person enjoys plenary session of the Executive Council vigor or is handicapped, whether his life has just begun or is nearing its end. The duty to respect the life of the innocent cannot be set aside or suspended because people are unwilling to recognize it, or find it irksome, or consider that it enters into skill with other less fundamental rights. ... This literally fundamental right to life is not assigned or conferred upon human beings by the laws of the land. No human legislation, no legal judicial sentence can ever morally justify an action which deliberately sets out to destroy the life of an innocent individual". So said the Declaration of the Bishops of England and Wales, published in London in December 1981.

But editorials in Lancet, BMJ, and the Pediatrics journals poured in with warm praise for Dr. Arthur and those who defended him.

The other episode, a article by Peter Singer

In the journal Pediatrics, Peter Singer published a 1986 Commentary in which he contrasted the notions of Sanctity of Life and Quality of Life. For years he had been talking about de-sanctifying, de-sanctifying, human life. He developed in this article, applying them to the neonatal status , the ideas that, years before, he had included in the Chapter "Consequentialist argument in favor of euthanasia", of his book Practical Ethics. The article in Pediatrics raised a storm of protest that frightened the editors of the journal, but there were also numerous letters of approval for Singer's ideas.

"If we are prepared to kill a fetus at an advanced stage of gestation when we estimate that it is at risk of suffering serious malformations; and since the dividing line between a developed fetus and a neonate does not constitute a decisive moral dividing line, it is very difficult to rationally sustain the conclusion that it is worse to kill a neonate that is known to suffer such malformations". Recovering a dialectic previously expressed by John Lachs (there are children whose sensibility and intelligence are inferior to those of a pigeon or a sparrow), Singer affirms that in terms of sensibility, capacity for self-determination, there are deficient children who are inferior to a pig or a dog, so that, in accordance with his anti-speciesist mentality, once the ethical frontier that distinguishes man from the other animal species has been demolished, the euthanasia of the profoundly deficient is self-justified on the grounds of the intellectual-affective inferiority of his potential victims, inferior to that of animals that are sacrificed when they are sick and suffer uselessly.

This view may seem strange to us in its compassionate cruelty and in the crudeness with which it sweeps away values long held in our Christian culture. Yet it seems acceptable to many. It is, in today's post-Christian circles, impossible to argue against neonatal infanticide once the moral licitness of abortion has been accepted. The topic has been argued with enormous logical force by Michael Tooley in his book Abortion and Infanticide. And James Watson has order granted parents a discretionary deadline to accept or reject, through neonatal euthanasia, their children.

Throughout the early 1970s, the ideological instructions in favor of neonatal euthanasia was consolidated. There were remote antecedents: John Fletcher had designed the measuring rod of quality of life as an absolute rule with his indicators of humanity, a heuristic procedure to classify human lives in a spectrum of greater or lesser dignity and vital quality. With these indicators of humanity, the Humanhood indicators, it becomes possible to objectify, in an almost quantitative way, the prospective or real value of a life. Life is measured in cold figures. The idea of incommensurability, of the inestimable, unique, unrepeatable value of each human life, easy to transpose to a logic of sanctity of life and to an existential understanding of man, whoever he may be, is replaced for modern times by a technique of quantitative, objectifiable evaluation , in which the physical, intellectual and affective components of each real life can be appraised on quality scales, which yield a numerical sum total. Then, and inevitably, the tables of quality indicate, for each historical circumstance, for the changing economic conjunctures, a dividing line that separates the acceptable lives from the lives that do not fulfill the requirements of humanity. Those lives lacking value are dispensable.

3. The inevitable continuity between abortion and neonatal euthanasia

The ethical, psychological and cultural continuity between abortion and euthanasia is unavoidable. That is, abortion advocates cannot rationally oppose neonatal euthanasia.

And this idea is shared in culturally and ideologically very distant circles. In a speech to the participants of the XI European Perinatal Medicine congress , held in Rome in April 1988, John Paul II pointed out this close link between abortion and neonatal euthanasia. "Respect for nascent life in all its phases in the womb of the mother is the foretaste of the respect that must continue also in the neonatal phase, especially that which is due to seriously immature and malformed neonates. It is the logic of death, inherent in the legalization of abortion, which today in some places pushes people to call for the legalization of neonatal euthanasia and to apply this internship to newborns with defects or born prematurely, whose existence, although possible, is not free of difficulties and risks. Theright to a healthy child is proposed by some and the so-called quality of life is placed as the decisive criterion that determines which lives are accepted, both before and after birth."

I think the Pope was not exaggerating

A few weeks ago, the media reported an episode that took place in a hospital in Seville: a low birth weight newborn baby was declared dead and sent to the cold room of the hospital mortuary. His father wanted to see him. And to his astonishment he discovered that he was alive. The Resident Physician had made a mistake when evaluating him. She thought he was dead, when in fact he was alive.

This is obviously an unintentional error. I do not know the factors that may have influenced its production, and what I am about to say must be taken as a simple intellectual exercise. Has not the culture of abortion influenced the low appreciation for neonatal life, when it is weakened by immaturity or disease?

Biased decisions

The causes of the deceptions that can lead physicians to neglect neonates have been studied, linked to overly demanding notions of quality of life, the fear of being prosecuted for having saved a wrong life, and a series of false or misinterpreted messages that play, in many cases, a decisive role:

The frustration and discouragement of seeing that, many times, the efforts to deliver a premature or malformed baby fail. There are neonatology services in which hopelessness becomes endemic and in which, in moments of great work and tension, the agreement of fail or not to initiate care is taken too lightly.

The appearance of the child may, inasmuch as it produces an unpleasant impression when it is marred by facial malformations, malnutrition, jaundice, electrode wounds or hematomas from venous puncture, or when crying and expression are interpreted as a sign of excessive suffering. But we know that many of these things are transitory, they leave no trace. And it is very unprofessional to get carried away by aesthetic feelings: beauty or ugliness has nothing to do with decisions to suppress or not to apply life-saving treatments.

Sometimes, parents' withdrawal , not coming to visit their children or not calling to ask for them, can relax the attention and even induce withdrawal.

It is easy to get carried away by negative biases when evaluating the prognosis. Predictions about immediate and, especially, long-term outcomes deadline are subject to many subjective factors. It has been shown that indications for suppressing treatment are much easier to make following the loss of a case for which much work has been done (there is no point - it is said - we have just lost a case just like it). Even the objective data - laboratory figures, brain ultrasound scans, diameter of the ventricles - are interpreted differently depending on recent experiences.

Hopelessness, the feelings that children or parents arouse, the way of perceiving suffering, the level of tolerable impairment, seeing that one's own work is esteemed or not depending on whether or not parents visit the children, all this may weigh on the appreciation of the child's life. A tired or hardened heart may be more inclined to abandon the child in non-treatment. The need to make that decision more bearable brings the physician dangerously close to neonatal euthanasia.

Case seen at the Central Deontology Commission. Meconium in amnion. Condemnation. Oxygen and sedation. Desperation of the father: no fight for the life of the neonate. To another center: cleft palate, language largely obstructing the airway. Spectacular recovery of the dying baby. The tragedy had begun in a private clinic that calls itself Gynecologic-Neonatology, which offers the full range of interventions (surgical sterilization and FIVET, neonatal ICU and abortions). In addition to fatigue and indifference, is it not a disconcerting fact that the paradox of saving lives and destroying them is part of the same professional package?

There is already professional validation of neonatal euthanasia. The Dutch Pediatric Society, after much internal discussion, published in 1992 a document "To do or not to do", prepared by committee , which was sent to all pediatric departments and which should also be made available to parents. When a child with serious problems is born, the first obligation is to make a correct diagnosis. Once the diagnosis has been established, the physician must present the prognosis to the parents, assessing future communication abilities, the possibility of leading an independent life, the existence of mental or physical suffering, and the duration of life expectancy.

With these data, the family must answer how far they are willing to carry the burden of a child with serious problems. If, for example, the child is premature and, despite artificial ventilation, has diffuse brain damage, the physician and family must choose whether to continue, reinforce, or discontinue intensive care, or whether to stop all care. The parents have to decide what to do, certainly with time to think and consult, and the physician will do what they determine, if it is compatible with their professional and ethical convictions, or ask a colleague who has no objection to carry out the parents' wishes to replace them in the care of the newborn. fail care means the death of the child, but that has no legal consequences: such a decision is made hundreds of times a year in the Netherlands. But when the child can survive without financial aid and can be cared for at home, in an ordinary crib, despite its uncorrected malformations or extensive brain damage, then Dutch physicians who believe that euthanasia of these children is morally justified, can do so: the majority opinion of the members of the Dutch Pediatric Society is on their side: mercy authorizes the death of those who suffer a life of agony. Logically, not everyone agrees with agreement : the association respects both behaviors. The parents have the word. It would be advisable that, if the neonate is put to death, the physician communicates the case to the authorities, in the certainty that they will never be prosecuted, although, the document concludes, one needs to be very courageous to do so.

How long will tolerance for doctors who respect all human life last in the Netherlands? The document To do or not to do? confers the power to decide to the parents. And as has happened with abortion, in a few years those who respect life will begin to be considered as unsympathetic individuals who do not collaborate in the actions authorized by law.

A few weeks ago, a article appeared in JAMA on whether it is compatible to sincerely live the commitment to respect life of the Hippocratic Oath and the Declaration of Geneva, the Universal Charter of Human Rights and constitutional texts, with the specialization program of neonatology. The pessimistic conclusion of article was to say that it will be very difficult in the future to make respect for life compatible with the social demand to eliminate lives lacking in vital quality.

This is a challenge that makes dedication to medical ethics enormously attractive. Once again we must conclude that this is where a muted, fierce, hopefully victorious, battle against utilitarian reductionism will be waged.

4. What to do?

Turn around. Humanity must be recovered

Proclaim as a fundamental human right the right to have defects, to live with defects, to not be perfect, to tolerance for handicap. A few years ago I spoke about it in a joint meeting of the Parliamentary Assembly of the committee of Europe and the European Parliament, sponsored by AMADE.

Is it too difficult? Is there no humanity in the acceptance of malformation? I end with a story that I believe points the way for those who have lost, in the obsession with efficiency and strength, who only desire competitive and gifted children. It places our topic in the perspective of the civilization of life and love. And it reveals, by contrast, that abortion and neonatal euthanasia are genuine expressions of the civilization of uprooting and death.

A woman, a Scottish psychiatrist, tells us how it is possible to live, with humble simplicity and infinite inner richness, respect for the deficient life. The story has not a milligram of sentimentality. It is told with the objectivity that gives the official document of Medicine.

Karen Palmer, in a staff View, entitled Peace and Pain, published in the July 23 B M J, tells of her joy at becoming pregnant shortly before Christmas 1992. She tells of the joy with which the news was received by her and her husband, also a doctor, and by the proud grandparents-to-be; of the weeks filled with anticipation and hope. She tells us of the proud joy of noticing the first fetal movements at 18 weeks; of the scares of the days when the baby showed no signs of life, and of the visit to the midwife who confirms that the little one's heart is there beating strongly. But here comes a worry: Karen's belly does not bulge as much as expected. Although she had agreed with her husband to stay away from doctors during the pregnancy, they go to an obstetrician who performs an ultrasound and gives them the terrible news that there is an oligohydramnios and multiple malformations, so it is very likely that the pregnancy cannot be carried to term.

Naturally, the news was devastating: Karen felt for a few days the sensation of having lost her son and cried a lot for him, as if he had died. She tells us: "The lifeline we clung to was this: that this tiny, damaged life we had been given was precious and we could not abandon it. In those first few days of downheartedness, as if aware of the need to remind us of its importance, the child stirred within me much more than it had before. We came to the conclusion that we were not going to do anything that was not in the child's best interest. We told the doctor so, and he understood.

The months that followed were very hard. We learned to love this special and unexpected son. And also to fear the moment when he might die. Our family, friends and colleagues helped us a lot. They gave us a lot of encouragement, and the truth is that we needed it all. An ultrasound at week 25 showed that there was very little lung tissue, so the prognosis was even more clouded. It was tremendous to feel him full of life and know that he would never be able to live outside of me. People congratulated me when they saw me on the street or in the hospital, and asked me how things were going. Fortunately, little by little, everyone found out what was going on.

There were doubts about how to prepare for the birth: whether a caesarean section might be necessary, as presentation was breech; whether it would be good to monitor the birth or an emergency intervention in case the umbilical cord was compressed. My head was spinning. At times I wanted it to be over soon, and at other times I wished I could carry him inside me forever, alive and moving. But one thing was always clear: we were not going to abandon him.

On August 3, the obstetrician performed a cesarean section. He took Jennifer Grace out of my womb -that's how we baptized her- a rosy, beautiful baby girl, a bit small, to be honest. I held her in my hands for a moment, but she was taken away by the pediatricians. My husband and I experienced real joy. He went to Pediatrics and there he introduced the child to the grandparents as a 'very brave fighter'. I saw her again when she was three hours and average old. An ultrasound confirmed that she lacked kidneys and could not possibly survive. She also had pulmonary hypoplasia, but assisted ventilation would not have helped. For the last five minutes of her life we cradled her in our arms and said goodbye. My mother helped me dress her and took some pictures.

Why am I telling this story? Simply to let people know what happened. Perhaps this will make some people think about whether abortion or euthanasia of the newborn is the best thing to do for the parents of a severely malformed child and for the child itself.

After Jennifer's death we have thought a lot about those months of pregnancy. It was a very special time, precisely because she was with us. Now, we can give thanks for her and mourn her as a member of our family whom we loved dearly and whom we have lost.

We had a funeral to celebrate his short life and pay tribute to him for the immense good he did for us. We can visit her grave and bring her flowers. We can talk about her. And if we have other children, we can tell them about their big sister. We can do all of that. And that will financial aid ease the pain of losing her. If we had rejected her with abortion or withdrawal, all of that would be forbidden to us."

This is the end of Karen Palmer's story.

This also ends my speech.

Thank you very much.