Some Ethical Issues Related to Child Care
Yesterdays' ethics are being rapidly superceded perforce by the advent of powerful, effective and toxic drugs and modern sophisticated technology. The new philosophy is rapidly becoming "the end justifies the means" as opposed to "the first essential of treatment being that it shall do no harm". A number of important aspects are dealt with on suscitation, resuscitation and termination. Attention is then given to the ethical aspects of eugenics and euthenics, relations with industry, the child's right of consent and mutilation. More questions are asked than answers given but throughout the two persons at the sharp end of decisions, the child and the paediatrician are considered in relation to the parents, the clinical background, cost to hospital and parents and common sense. The need for policy decisions to deal with certain acute problems on which an immediate decision must be taken is stressed and the need for a multidisciplinary ethical committee of independent mind. The rights of children are considered to be ethical decisions by adults.
Keyword : Ethics/child care; Eugenics; Industry and ethics; Mutilation of children; Resuscitation and suscitation;
Ethics and morality are so intermingled that busy paediatricians facing immediate decisions have no time to analyse the differences and I shall refer to these both as ethics. Records began several thousand years ago with the Hammurabi, Chinese and Hindu codes. In the western world it was Greco-Roman and Judeo-Christian traditions which received attention whilst Islamic and Buddhist codes grew up elsewhere. The best known early code is that of Hippocrates who taught that "The most important thing about treatment is that it should do your patient no harm". A valuable oath prior to 1900 when very few drugs worked but become obsolescent and modified in the second half of the 20th century as more and more potent, and more and more noxious drugs swamped the market. The new philosophy is that all drugs are potentially harmful but the end justifies the means;- but is it ethical? Cytotoxic drugs always damage chromosomes and could produce male sterility, but may save a child's life. Is it ethical to use it? "Yes", says the Doctor. "Yes", say the parents. "You know best", says the child. But twenty years later when the man is sterile what does he, his wife and his parents say? Can he succesfully sue you?
The rights of children are much talked about. I do not see that children have any greater inborn rights than any other living creature or planet. Adults arrogate to themselves the authority to decide what rights adults, women, children, fetuses, and embryos have. In fact this is really an exercise in morality and ethics and there is no greater standing than that. Long ago philosophers decided that food, clothing and shelter were the basic needs. Health care, education and protection then became added. Now bonding, being loved and unpunished seem to be the keys. It is a pity that having two heterosexual married parents is no longer regarded as a right.
There are many ethical problems. A few problems are described as follows:
Suscitation, Resuscitation and Termination
These three aspects are becoming particularly clamant for ethical guidance. Not only the desire to prolong life, or existence, is involved but also the high cost in money, nursing and medical time, potential damage to the marriage and family. Younger paediatricians are tending to look on death as a failure. Older paediatricians will recall the aphorism "Thou shalt not kill, but need not strive officiously to keep alive". All of us want a humanitarian end, why is it so difficult to accept it for others?
This refers only to initial respiration at birth. Three basic groups are affected, the asphyxiated, the deformed and the very, very low birth weight baby (VVLBW). Ethically it seems essential that efforts are not spared on the asphyxiated, a very unpredictable group as far as outcome goes. Deformed babies in whom respiration does not start, like a gross encepholomyelocele or inoperable conjoined twins are a different matter. So too is the anencephalic. Is it ethical to keep it alive in order to facilitate organ transplant? From the baby's point of view certainly not. From the parents view, for they must be kept fully informed it may increase their suffering, but later give some comfort. There is not time to consult all involved at the point of birth. It must be discussed before birth and made quite clear to the parents that there is no need to start respiration artificially if the baby is going to die even with artificial help. The problem with VVLBW baby is multifold. The smaller and less mature it is the greater the chance of it dying fairly soon or being seriously brain damaged. The amount of nursing time for each such baby is horrendous. Adding such a baby to a Neonatal Intensive Care Unit full of VLBW babies means one has to go, or the standard of nursing all round suffers. Where parents have to pay huge costs the family may suffer with family disruption. All these facts should be known before, especially to the parents. Each unit should have a policy for the VVLBW who is not breathing, does one resuscitate, produce machine controlled existence of unknown duration, use the costly nursing and medical time on such a poor prospect or let the fetus slip away? The funding and the sophistiscation of the unit are critical. Certainly after delivery with agitated parents is not the time to make such decisions, but at a prior time. A very unethical reason for starting is to boost the units statistics. An equally unethical reason for not starting is in order to reduce the neonatal mortality since the baby was never "alive". Equally unethical is to start treatment to boost the unit's income from charges.
If any of these babies breathe spontaneously, a totally different situation arises.
Once again there are three basic groups. Firstly the child brought in after immersion, road traffic accident, poisoning and so on. There be no heart beat, no respiration, hypothermia, cyanosis, and little or no neurological activity, EEG may not at once be to hand and may not be conclusive. Easy advice is to resuscitate everything unless long time dead. Easy but is it ethical? The inevitable result is patients dependent on life support systems, perhaps with no brain activity and others with chronic vegetative state. There is a very narrow ethical tightrope to walk. Secondly there are the group of unexpected incidents. Syncope on lumbar puncture or venesection, sudden collapse of a patient post-operatively or at another time. This situation demands all out resuscitation. Thirdly there are grossly ill patients such as terminal cancer or VVLBW babies who collapse frequently and have to be resuscitated. When does this become unethical? Not infrequently doctors persist with these dramatic events when parents have come to accept that their child, as they put it "Has suffered enough. Please make sure he has no more pain". The one essential is not to make the parents feel that they have decided to "kill" their child, clinicians must participate and share or take "the blame" for a medical decision easing parental guilt feelings in the future.
Termination of Life Support
Many of these cases derive from resuscitatlons as described above but others occur de novo. The decision to stop can never be taken lightly and must involve the parents, paediatrician in charge and an independent doctor. There are two main categories involved. Firstly there are the brain dead patients who depend for existence on cardiac, respiratory and alimentary support. Parents, even if they are not having to pay huge bills, often spontaneously reach the view that their child should suffer no more. Spontaneously provided false optimism should not be cruelly used by the staff to prop up parents morale. The terminal blow is often greatly softened by knowing that the "gift of life" or sight can be given to six children or more. (Two kidneys, heart, liver, lungs, corneas and bone grafts). In this way they can accept that the life of their child was not in vain. Because life is under the control of the staff a dignified end can and should be so arranged, with the family coming to say goodbye, religious rites completed and the parents present if they so desire.
Secondly there is the child in chronic vegetative state, still able to breathe but otherwise inert. The absence of numerous monitors and tubes makes the patient seem less critically ill to the parents. They need convincing that the brain damage will never repair and the child come out of coma. Irresponsible gutter press reports of miracle cures after "x" years in coma do not help. Even after parental agreement a most serious ethical problem remains. Euthanasia would be the most humane termination but this is still illegal in many countries. Instead the child is starved or dehydrated to death, often under heavy sedation. This produces very serious ethical problem with starvation taking weeks and stressing nursing and medical staff unacceptably. Dehydration is quicker but even more repugnant in some ways. The ethical question is that however much the end is felt to justify the means is it ever ethical to starve or dehydrate a patient to death? The only alternative seems to be terminal care over years, or decades, paid for by the state, stressing the family beyond reason and compelling the patient to exist whatever his views might have been in the circumstances. These cases are expensive in staff time and will grow in numbers every year if all are kept in suspended animation. Personally I would never kill a patient by starving or dehydration without sedation at a level which is virtual euthanasia. Such problems are one of the best reasons for legalising euthanasia with appropriate safeguards. It seems much more ethical than the existing methods.
Ethics and The Child's Right of Consent
Only the child has any ethical right to consent to an operation or experiments treatment to be carried out on his or her person. Parents, paediatricians and others may assume this right of consent but this does not make it ethical or even legal. In the UK for instance a child operated on, for say hexodactyly, can sue his parents and the surgeon for assault when he reaches the age of 18 and similarily for all operations. The fact that an operation was potentially life saving has always been accepted as justification but clearly this reasonable exoneration does not apply if parents authorise an operation not be in the best interests of the child such as ritual circumcision for non-medical reasons. Parents do sometimes try to block a life saving operation but this is unethical and the law can overrule the unethical decision not to save the child. A harmful change in the law in Britain means that even if parents, child and doctors agree on an operation or to withold it the non-medical local director of Social Services can legally block it and vice versa if parents, child and doctors do not wish a procedure such as chronic renal dialysis to be employed he can order it to be done. It is legal but very undesirable and very unethical.
The situation in research is very difficult. In principle it is unethical for a parent to allow a child to be the subject of research and probably illegal in many countries. Nobody has the right to volunteer another person for experimentation. It may be acceptable for a child to take part in a controlled study of two equally potent and toxic drugs to compare these. If at any point one of the drugs is proven better than the other then children not on that drug must ethically be withdrawn from the trial forthwith since the poorer trial drug is no longer in the best interest of the child. Statisticians will protest but let them! Assault such as venepuncture is not ethical for research but removal of a little extra blood when venepuncture is taking place for clinical reasons is usually considered acceptable. Non-therapeutic invasive research cannot ethically be justified since it is not for the best interest of the child. The recent interpretation, or rationalisation that the end justifies the means if it is "not AGAINST the best interests of the child" is unethical, but may be justifiable in some circumstances. Research must be carefully supervised ethically by an impartial committee. Editors of medical journals have a significant role to play in laying down ethical terms for acceptance of articles and adhering to these. Non-intervention studies such as measuring and observing are usually acceptable.
Mutilation pf Children
Nearly everyone would agree that children should not be mutilated or certainly not until they reach the age of majority and have a full under standing of the implications, dangers and long term consequences. Nevertheless mutilation including genital mutilation is still widespread in many countries scattered round the world. Some of this is illegal, much related to religions, customs and traditional ceromonies based on ignorance, religion and superstition. Not long ago mutilation of feet was common in the Far East. Genital mutilation is still common in girls in Egypt, Uganda and many other countries. Such genital mutilation may be relatively minor or very severe with infibulation. Male genital mutilation by circumcision when not required is still encouraged by certain religions, a custom which should have ended long ago. Mutilation of the face, breasts and ears is also very common.
Clearly all of these practices are unethical since a baby or young child cannot give informed consent and the parents have no rights to do so since it is not in the best interests of the child. In fact the basis of many such mutilations based on old customs or religious dgma is to make the individual less attractive and/or to remove from their body tissue conducive to full sexual enjoyment. This is clearly against the best interests of the child. It is high time pressure was brought to bear on governments and the leaders of religions to put a stop to mutilation practices. Paediatricians worldwide should condemn such acts as unethical and unacceptable.
Eugenics and Euthenics
These formerly unpopular ideas are again being voiced as planning for a healthier and better succeeding generation is being considered. Ethically if one agrees that baby has the right to be healthy then it is difficult to object to the right to be healthier. Euthenically this ranges from better nutrition of the mother before during and after pregnancy through a clean delivery, absence of infections and infestations, absence of mutilation or abuse, adequate maternal breast feeding, for at least four months, and so on. Eugenically it may range from birth control as far as technical attempts to select an ideal baby, such as a woman deciding to have a male child by artificial insemination opting for the sperm of a tall, fair, musical, athletic donor rather than a small, dark, man of average intelligence and ability. When both sperm and ovum are to be selected from donors the character of each "pit" may be chosen. Unfortunately for such perfection seekers in modern mode Mendel's laws still apply! The rights of the potential child in such circumstances are very difficult to define but these are todays problems.
Cloning is now a real ethical problem. In Scotland a sheep has been cloned succesfully from mammary tissue. Presumably scientifically the same technique could be employed on humans and indeed may already have been been used. What then is the ethical stand of paediatrics? The first step along the road was artificial insemination of the wife by the husband in infertile couples (AIH), that was readily acceptable, next came artificial insemination with sperm other than the husband where the husband was azospermic (AID). That too was easily accepted as ethical in general terms. The next logical development was obtaining ova from a wife whose fallopian tubes were blocked, fertilising these with husband's sperm and making the infertile wife pregnant (WE). This procedure took longer to accept as ethical but differed little from AIH except that the ovum was involved. It has eugenic possibilies. A wife who is a haemophilia carrier could bear a healthy donor ovum to prevent a haemophilic son or a carrier daughter. At this point women's fib took over and single women demanded and got the "right" to be artificially inseminated from a male or a sperm bank where she could choose the background of the donor, as mentioned above, and perhaps the gender. A more difficult ethical problem is fear of one male's sperm being used to produce many children in a small geographic area, altering the gone pool. Such actions seem less ethically justifiable, if born to a lesbian couple, and if contributing to single parent families. The question of surrogacy then arose. Surrogacy is often used wrongly. It refers to a woman carrying and bearing a child not derived from her ova. AID or conception from a man means it is her ova and she is not a surrogate mother. At first surrogacy was thought to be unethical. Then it became ethical provided no payment was involved. Problems have arisen, with the surrogate mother deciding to keep the baby and so on but the good seems to be overcoming the bad. In the UK where, IVF was pioneered, sisters, friends and mothers are surrogate mothers for married couples where the wife is unable to carry a baby to term and the results seem excellent. Sperm and ovum come from the married couple and the wife may be made ready to breast feed before the surrogate mother is delivered. An extended family! It is of interest that before birth the antibodies received will be those of the surrogate mother and after birth those of the biological mother if she breast feeds. Do many excellent results justify the "means" and problems in some? We must each make up our own minds, but it seems a natural and ethical progression.
Molly the cloned Scottish sheep now raising funds for research into cystic fibrosis opens up a whole new bag of tricks. Should human cloning be permitted? Is it always wrong to clone humans, or will there be extenusting circumstances? It may be wrong to clone a hundred dwarfed, left-handed gamma mechanics like "Brave New World" but if a father or mother becomes sterile after one child is it unethical to clone a second child from the first? After all it is simply an identical twin of a different age when all is said and done! Today everyone is clamouring on the unethical side, especially religions and orthodox with demands cloning be banned. I wonder where we will be through the millenary into the third millenary into the third millenium, say in 2097?
Paediatricians, Ethics and Relations with Industry
Industry is responsible for a very large proportion of the research and development of drugs and aliment for children. For paediatricians to adopt a negative attitude, or to fail to cooperate in progress would be an unfortunate and in itself could be considered unethical because it would slow up progress for the benefit of children. There is the fear that industry will corrupt paediatricians, that they will be seduced with research grants, free meals and assistance to international meetings they could not otherwise afford to attend into betraying moral and ethical principles to the benefit of the donors. The problem is to find a middle course such that progress can be maintained with mutual cooperation and trust without gross abuse, if such ever occurred.
The International Pediatric Association (IPA) has been considering these matters and tried to produce a simple code of practice soon to be published. Basically donations from industry for research, support of meetings and travel for poor younger paediatricians are considered acceptable provided the agreement is ethically sound. In the case of research this includes an ethical design approved by an ethical committee and a right for the research worker to publish the results whatever these may be. Acknowledgement of the source of funding is accepted. Space for UNICEF and WHO to promote breast feeding at Congresses is provided this does not conflict with the relevant National code. Acceptance of such educative stalls is given because millions of babies worldwide are artificially fed and it is important that paediatricians are kept up to date with the rapid changes in relation to hydrolysis of varying degree, HDA additions and so on. Such information is essential so as that developing countries who are about to licence or manufacture formula do not "rediscover the wheel" or the many historical errors which led to the very high quality formula ethical manufacturers produce today. The policy of IPA however remains as expressed in Resolution 426 namely "IPA has for many year strongly advocated breastfeeding for babies worldwide, with appropriate health education and will continue to do so".
Continuing and improving exchanges of views between IPA and the Infant Food manufacturers has been encouraged by the 1996 Code of the IFM for its members to follow. These recommendations include, placing health and wellbeing of infants and young children first at all times, actively support education about the benefits of breastfeeding, ensuring that high quality infant formula is available for those who need a "breast milk substitute". (n.b. IPA dislikes the term BMS as there is NO substitute for breast milk!), supporting governments and communities in efforts to increase public awareness of sound infant feeding practices, recognising that all mothers should enjoy the basic freedom to make their own decisions about how to feed their babies, with the help of their health advisors and with access to factual information, and so on.
This new voluntary code of ethics drawn up by IFM (which consists of major manufacturers such as Nestle), covers most points which IPA would advise and it is felt that IFM should be encouraged to get all manufacturers to conform as far as practicable to this ethical code, rather than be antagonised by unhelpful negativism and hostility which is counter productive. Half a million women die in childbirth and many millions artificially feed for whatever reason. It is important that the formula and teaching feeding technique for all these babies is as good as possible and presented ethically.
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