The operation to separate the conjoined twins born in the Philippines raises difficult ethical issues, such as what happens when the parents do not want the operation. About this and other dilemmas in pediatrics in the article before you
Roy Shani Galileo
The concept of the family doctor developed in England in the 19th century and provided a medical response for all ages: from infancy to old age, and it is not for nothing that this medical approach was called "From Cradle to Grave", from the cradle to the grave. Pediatrics is a relatively new discipline, which was established as specialist medicine only at the beginning of the 20th century; Until then, the doctor treated the whole family as well as the children.
With the development of medicine and the distinct branching into different clinical disciplines, the specialty of pediatrics also developed. First, the child was sent to the specialist pediatrician only in situations where serious medical problems, specific to children, were discovered. Over the years, pediatrics became primary medicine, and in our society most family doctors hardly ever see children today, because in cases of need, they go directly to pediatricians.
Doctor and child: basic ethics
The first ethical issue that medicine was required to deal with, and is sometimes required to this day, is how to define a "child"? "The legal definition, according to which a child is any person under the age of 18, does not provide an adequate response to many medical cases, so the psychological definition is the essential definition," says Dr. Yechiel Bar-Ilan, an internist and senior lecturer in medical ethics at the Faculty of Medicine at Tel University -Aviv, and expands: "There is no clear boundary as to what is a child patient and what is not a child.
"In principle, the elderly patients are what are known as 'agents' in society - they decide for themselves when to go to the doctor. In this context, the ethical questions are less prominent, because we trust older people who know how to take care of themselves: if they decide to undergo a certain operation or to forgo it, this is probably what is right for them (in their opinion). Unlike adults, children do not have independence in decision; We decide for them."
One of the basic principles in medical ethics of the child is his right to be treated as a child. Hospitalizing a child with adults is inherently wrong because the child needs an environment that is suitable for children. "There is no unequivocal policy in Israel as to where the border is," says Bar-Ilan, "legally, anyone who is a minor under the age of 18 is under the permission of their parents, with the exception of situations that refer to adolescents by law, such as in the cases of AIDS and abortions (and see below).
From a legal point of view, pediatric medicine is limited to the age of 18, but from a practical point of view it is only until puberty, because adolescents are human beings with understanding, which makes the situation even more complicated, because even when you decide for them, it is immoral to ignore their opinion and wishes."
Children do not make decisions about their bodies, which leads to ethical questions. Photo: ingimage
Ethical controversies in pediatrics
Classic cases recognized in law and ethics where adolescents have a special status are issues related to sexual behavior. When a boy asks the doctor not to tell his parents about the AIDS test he did, the doctor in most cases does respect the boy's wishes and does not inform the parents about the test.
A similar confidentiality status also applies to girls from the age of 15 who wish to have an abortion without informing their parents: and this is surgery. "I remember a case of a 16-year-old girl who came to our ward to perform an abortion without the family's knowledge," says Bar-Ilan, "the girl mentioned to us that if this was revealed to her family, there was a real fear that they would physically harm her on the grounds of dishonoring the family.
We admitted her to the hospital and the abortion was performed that day, but for some unknown reason things got complicated and she ended up in a coma in intensive care. At this moment the question arose - what to do with the parents? On the one hand, for all other purposes, she is a minor, and you must inform the parents that their child is in danger, but then the parents will ask why the child is in intensive care? Should the doctor lie to them? How to lie to them? How to get out of it? In this case, we told her parents that she was sick, we did not close the abortion issue, and after two days the girl woke up and recovered."
The girl stated to us that if this was revealed to her family there was a real fear that they would physically harm her on the grounds of dishonoring the family. We admitted her to the hospital and the abortion was performed that day, but for some unknown reason things got complicated and she ended up in a coma in intensive care. At this moment the question arose - what to do with the parents? On the one hand, for all other purposes, she is a minor, and you must inform the parents that their child is in danger, but then the parents will ask why the child is in intensive care? Should the doctor lie to them?
Cases related to sexual behavior and sex differ from other cases in the sense that the legislator does not declare that the girls are independent to decide for themselves on the one hand, and on the other hand there are considerations of public health, and the fear that if there is an obligation to inform the parents of the girls they will not have an abortion or have a "black" abortion.
The situation gets complicated when it comes to teenagers. Photo: A. S. A. P. Creative Shutterstock
Ethics differ from country to country
These considerations allow doctors (in Israel) to perform an abortion and keep it a secret from the parents. This point illustrates the complexity of ethical decisions concerning children, that on the one hand children and boys do not understand things in their full depth, but nevertheless there are situations in which their wishes must be taken into account and respected, even if apparently these situations are perceived as undesirable.
One of the important landmarks in the development of modern medical ethics was marked by the emergence of a controversy in pediatrics. In 1969 an academic debate broke out at Johns Hopkins University in Baltimore in the United States. The debate in question revolved around the unofficial practice that was accepted in those years in hospitals in the United States of giving morphine to premature babies who are in serious condition, babies with severe birth defects and those born with profound retardation and waiting for them to die.
The doctors did not share with the parents the decision to euthanize their child, and told them that he simply died. The killing was done out of pity and thinking that the lives of these babies have no meaning. The debate spilled over into the American mainstream media, and was one of the first bioethical issues that involved the public and politicians. Until this event, the doctors were considered a closed and mysterious guild, in which a person who is not a member, who is not a doctor, gave them full trust.
After one of the doctors of the university's academic hospital raised his doubts about the matter to the hospital management, the management saw the issue as a challenge, chose to act transparently and initiated a conference that dealt with the issue and included medical, spiritual and religious people. The issue sparked many debates, which also included the financial aspect involved in the expensive treatments these children need in their lives and which come at the expense of other patients.
Questions of morality and religion do not disappear from the doctors' eyes. Photo: ingimage
Should it be treated at all costs? Depends on which countries
"These questions have not been clearly resolved to this day," notes Bar-Ilan, "there are very significant differences between the policies that different countries adopt in such contexts: the Americans will deal with it at any cost and will only give up when the situation seems lost. The English will stabilize the patient and only then will they assess whether there is any point in further treatment; And in contrast, the Danes established an intelligent set of objective medical indicators that predict the chance of recovery. Those who meet the criteria receive treatment and those who do not - do not receive treatment. Israel is close in its position to the Americans, even though Israel does not have a clear policy on the matter."
Bioethical issues by their nature provoke severe disputes, especially as in the cases that arose in John Hopkins regarding the euthanasia of newborns. In a democratic society, when the patient is an adult, then the spectrum of possibilities before the system is limited, because the person ultimately decides about himself. But when it comes to ethical issues concerning children, it is about the best interests of the sick child who cannot decide for himself.
Says Bar-Ilan: "The question that is on the agenda is what is the moral obligation according to which one should act? Is it to save and give life to every child, or perhaps to prevent very severe suffering? Sometimes the parents themselves do not know what to decide and we see such cases in hospitals every day. For example, in Werdnig-Hoffmann disease.
It is a degenerative hereditary disease and the children with it suffer from severe lung diseases and die within the first year of their lives. Some of the parents are with the children connected to the ventilator in the hospital, feed them every day and take care of the children with great devotion even though they know the child will die soon. Other parents ask the doctors to let the child die from the first pneumonia, arguing that there is no point in letting the child continue to suffer. So who does good? The mother who acts with devotion or the mother who prevents the child from suffering?" Difficult questions indeed.
One of the main questions that arise regarding euthanasia in children is the attempt to measure and quantify the suffering against the meaning and value of life. "I don't think these things can be sorted. First of all, different people deal differently, some are dealing with a terrible illness and want to live, and there are others who in difficult situations want to die.
What is the factor that makes the difference we do not know. So go throw it at kids: some families can't deal with retardation, and others think blindness is the worst thing. I think it is wrong to prolong a person's life just to have a life, the external dimension - for example, human dignity - is more important, in my opinion, and it is necessary to combine and combine the two dimensions in order to make a decision", says Bar-Ilan.
Siamese twins: to separate or not
Perhaps one of the most challenging bioethical issues in pediatrics concerns conjoined, "Siamese" twins. Siamese twins are born connected to each other and there are different forms of connection: those connected in the head and those connected in the body, but in the majority of cases one of the twins has a damaged heart or lungs and therefore only one of them will survive separation in surgery.
In these cases, the doctors recommend separating the twins, thus saving the healthy twin and letting the twin with the damaged heart or lungs die, with all the sorrow involved. The separation analysis is a very complex and complicated procedure; No separation surgery is like the other, and it is less than one case per million births, so this means that there is no expert in the world for separating conjoined twins.
Many of these operations end in the death of both twins, and in some of them one survives and the other dies. There are cases where the doctors know in advance that the operation will not allow one to live but will let the other live. There are two main approaches to the issue of medical decisions about children in general and the separation of conjoined twins in particular.
One is derived from American law and the other from English law. "In the American approach, the parents decide for the child and the state does not intervene. In the United States, parents of conjoined twins are offered separation surgery. If the parents want, then they operate, and if they don't, then they don't," explains Bar-Ilan, "on the other hand, in England, the culture is different and the state's responsibility for the protection of the individual outweighs cultural pluralism, and it is the court that will determine what is in the best interest of the child."
In 2000, Bar-Ilan was involved in one of the most publicized cases of conjoined twins, and also published many articles on the subject. "It's a very interesting story that started on a small island called Gozo in Malta. The parents, devout Catholics, discovered during the pregnancy that the mother was carrying Siamese twins in her womb. The twins had one normal heart, so if the twins were born without separation surgery they would both be dead within a few months, whereas surgery could only save one of them and the other was destined to die.
Because the parents are Catholic believers, they chose not to have an abortion because according to the Catholic religion, abortion is murder per se. The parents also knew that without the separation surgery the girls would die after birth, but they insisted on not performing the separation because it was tantamount to murdering one of the girls. All they wanted was to give birth to the girls and let God do his thing." Since Malta did not have the necessary medical infrastructure for a complex birth as required in this case, the couple turned to the English authorities to implement a medical aid program that the English offer to citizens of developing countries that were once under British rule.
In court against the parents
The request was approved and the parents flew to England to give birth to the twins, knowing that according to doctors' estimates the girls would die within a few months after their birth. The parents named the twins Mary and Judy. Even before the birth, the English doctors repeatedly tried to explain to the parents that the twins would not be able to live with one functioning heart: but if separation surgery is performed then Mary, the weaker twin, will not survive, while Judy will be able to develop normally.
With the birth of the twins, the English doctors pressured the parents in an attempt to separate and save at least one girl, but the parents firmly refused because, as stated, it was murder in every way. The doctors did not give up and went to court claiming that with all due respect to the parents' religious beliefs, it is possible to save one girl in this case and the parents' decision to avoid surgery is a de facto death sentence for both girls.
According to English law, the best interests of the child come first, and in order to exhaust the rights of each party, separate lawyers were appointed for each twin. The judge was convinced by the doctors' claim that if Mary has no chance of living then there is an obligation to save Judy whose chances of survival are high, and by court order the twins were operated on at the age of four months. As expected, Mary passed away and Judy is still alive today, she is 11 years old and shows healthy and normal functioning. Different societies deal with bioethical questions related to children in different ways," says Bar-Ilan, "in one culture the parents are the sole decision-makers, while in another culture the child's best interests outweigh the parents' wishes."
According to Bar-Ilan, in order to reach informed decisions in sensitive cases, such as Siamese twins, historical precedents must be examined. "We know from history that conjoined twins usually don't want to be separated, even if it means they both die. In many cases, Siamese twins see themselves as one person, and for this reason I opposed the forced analysis of the Maltese twins. I don't think the doctors committed a crime, they still saved a person and now Judy is going to school and her whole life is ahead of her and it cannot be ignored, but this is a type of decision that involves being adventurous at someone else's expense: both because of the doubt that the operation will be successful and also because of the value aspects involved in it, for example , which in the eyes of the parents is murder."
"Decisions regarding children are decisions we make for someone else," concludes Bar-Ilan, "if God forbid something happens to me, then I will know how to decide and deal with it and give an answer. This does not apply to children, so things are more complicated.
In many cases, the parents themselves do not know how to decide. They know that if they decide then the doctors will respect their decision - which adds stress and burden and anxiety, because they don't always know how to decide for someone else. What is the decision based on? Based on personal consequences?
Precisely for a parent, who loves his child so much and has a lot of responsibility, the decision is more difficult. We don't have the self-confidence to stand up to our own decisions. In pediatrics you decide for someone else and this is a very basic point that makes ethics in this medicine such a complex and challenging issue."
for further reading:
On the separation of the Siamese twins
About Judy's return after surgery
Bar Ilan, YM (2002). Head-Counting vs. Heart-Counting: An Examination of the Recent Case of the Conjoined Twins from Malta. Perspectives in Biology and Medicine, 45(4), 593-603.
The author is a doctoral student in medical sciences at the Faculty of Medicine at Tel Aviv University
The article was published in Galileo magazine, November 2011
