Ethics at the beginning of life.
This is a report of a meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine, held on Thursday 21st September 2006.
The meeting was chaired by Dr Elvidina N Adamson-Macedo, Reader in Mental Health, University of Wolverhampton
Ethics at the beginning of life: the neonatologist and the preterm neonate
Professor Neil McIntosh (NM), Head of the Department of Child Life and Health, University of Edinburgh. Vice President, Science, Research and Clinical Effectiveness, Royal College of Paediatrics and Child Health
The medical team of professionals (doctors, nurses and many others) offer experience in making connections between conditions after birth and eventual outcome. Although they may individually be saddened and upset by a situation, their emotional involvement will vary. The key to the management of ethical issues is good and frequent communication – the listening component being extremely important for both sides. Ideally such communication should start from before a birth.
Ethical problems for the neonatologist arise as issues of resuscitation or of the withdrawal of maximum intensive care when it is clear that severe and irreparable damage has occurred to the infant, and the outcome for independent existence is bleak. How to manage such problems?
Parents invest a huge amount of emotion in the conception and pregnancy; the long term care of the child will fall heavily on their shoulders, and so they will have a vital perspective on the future.
Ethical issues may arise around a new birth because of conflicts within the health care team, among whom I include the parents. Unfulfilled expectations are commonly at the root of these conflicts; religious views may cause them, as when blood transfusion is refused, and shamefully questions of cost to the health service may figure, surely nowadays the basis of recommendations not to resuscitate babies born at 24 and 25 weeks gestation. The best interests of the baby must always take priority over the interests of the neonatal team or the parents. The issue of the safest place of birth - home or hospital - has an ethical dimension, and so also has caesarean section on demand, since this will result in twice the infant mortality of vaginal birth.
I will address the dos and don'ts around gestational age, severe congenital abnormality, and the baby born severely asphyxiated, usually at or near term.
Extreme prematurity threatens the survival and the quality of survival of the babies, and our major anxiety stems from the survival of severely disabled babies. The EPICure multicentre study looked at 843 extremely premature babies (below 26 weeks gestation) admitted to neonatal intensive care units, but importantly included numbers who would not survive to leave labour wards, during nine months in 1995. At 23 weeks gestation or less only 6% of babies survived; survival at 24 weeks was 26% and at 25 weeks 43%. The total survival was 38%, and in each group only 50% survived without disability. Our experience in Edinburgh, where we studied babies at 28 weeks gestation during the past 10 years, has revealed that 70% remained disability-free at age two years.
There is in the USA a baby who is regularly resuscitated despite his having severe anencephaly; can this be right? A baby with a huge tumour involving most of a lower limb was resuscitated, as the extent of his problem was unknown; when the full extent of the lesion became known it was decided, with the agreement of the parents, to withdraw care. Another baby was born with a bizarre deformity of the trunk, and resuscitated because the cause was unknown; when it was established that amniotic bands were solely responsible, he received intensive care, and is well and normal apart from a scar across his back at age five years. Resuscitation is appropriate in almost all cases; further decisions on care can be decided later with the help of the parents.
So it may be clear when and when not to resuscitate. Resuscitation may be followed later by withdrawal of care, as in the case of a baby born at 23 weeks whose head scan showed post-haemorrhagic hydrocephalus. Severe birth asphyxia has in many instances had a very poor outcome for affected babies, many of whom have eventually been wheelchair-bound, with little or no social contact even with their parents. Recent valid research has shown that a period of mild hypothermia may be significantly beneficial.
The decisions required of parents will be among the most difficult that they will ever face, and conflicts are common; unfortunately, relying on their experience, doctors may bully parents. We must consult and listen to parents, who may have good reasons for being committed to the care of a disabled child. These discussions may be protracted; an independent second opinion may be very useful, but obviously unwise parental choices may have ultimately to be decided in the courts.
We never withdraw treatment; we re-orientate care, with nursing and medical staff having equal shares in the decision-making. We withdraw life-saving medical treatment in a limited number of situations, two of which, the brain-dead child and the permanent vegetative state, only apply a considerable time after birth. Three situations may apply to preterm and term neonates:
· "No chance". Treatment only delays death, without useful alleviation of suffering.
· "No purpose". The child will be so severely disabled that he will never be able to take part in decisions about his own care.
· "Unbearable". In the face of progressive and irreversible illness the parents wish aggressive treatment to be discontinued in their own and their baby's interests, although medical treatment still has some potential. An example might be the baby born with hypoplastic left heart syndrome, who will in the first year of his life require three major heart operations, each of which carries a 30% mortality.
How to let a baby die? With dignity, and pain- and stress-free; the parents attend the decision-making ward round. The parents' choice might be for him to die on a ventilator, alone, or with religion, or with the love of family members. Euthanasia, being illegal, is not an option. When deciding when to let a baby die, in discussion with the parents, the critical issue is his potential as a human being: is it in his best interest to let him live?
Ethics at the beginning of life: the psychologist and the unborn baby
Professor of Psychology Peter Hepper (PH), Director of the Fetal Behaviour Research Centre, School of Psychology, Queens University, Belfast
The aim of this presentation is to review current knowledge of the behavioural and psychological development of the fetus and the implications of this for our treatment of the individual at the start of life.
Behaviour, actions and reactions are an important part of development; rather than being passive the fetus is an active participant in his own development. Movements are important for the development of the skeleton and muscles, and learning abilities promote survival. Examination of the behaviour of the fetus has revealed that he begins to move at about 8 weeks of gestation, exhibiting common patterns of behaviour very early in development, e.g. startle at 8 weeks, breathing and handedness at 10 and sucking at 13 weeks. We have found that mouth movements in female fetuses are more frequent and last longer than in the male; sex differences in developmental trends are to be expected.
Behavioural states such as sleeping and waking become apparent towards the end of a pregnancy, although the actual meaning of these is uncertain, since the fetus responds in the same way whether asleep or awake. He responds to stimulation of all the senses: touch at 7 weeks, taste and smell at 15 (one cannot distinguish between these), sound at 24 and bright light at 26 weeks; it is not impossible that vision is stimulated naturally. As we now know abilities emerge and then develop continuously, an example being that of hearing, which gradually increases in acuity and in physiologically subtle ways in utero, after birth, and until it reaches the adult state. The fetus is capable of learning, recognising his mother's voice from the 34th week, and music and specific aromas from 35 weeks; we have demonstrated the learning of a television theme tune prenatally by exposing babies to it after birth.
We interpret the purposes of prenatal behaviour as follows: movements develop muscle tone; stimulation of the senses develops the sensory receptor fields; and learning the mother's smell and voice leads to attachment after birth. The successful establishment of breastfeeding seems to depend upon a baby's familiarity with the mother's diet, experienced before birth. As our understanding of these behaviours increases there are implications for treatment, creating a number of ethical dilemmas.
Most studies of behaviour in the fetus use ultrasound; the ethical issue around this is moot - there are no good studies which show it as a cause of harm, and in my opinion it is harmless. It is of course possible that some long-term effects have as yet gone undetected.
We must interpret human fetal behaviour and abilities with caution; they are of course a function of the brain, but we have no understanding of the pathways involved. Early learning occurs in quite primitive as well as higher organisms; if the larva is exposed to a flavour, the ant prefers it. We may assume that behaviour reflects neural functioning and integrity, as in a high level function such as habituation: the strength of the fetal response to successive presentations of a vibratory sound wanes at a known rate (faster on average in females than males). A change in habituation in the fetus of a diabetic mother may indicate a deteriorating brain condition; a diminution in the movements of the lower limbs of a fetus with spina bifida suggests developing neural damage, and either of these situations could lead to the decision to deliver prematurely. The earlier in pregnancy the observation is made, the more fraught the decision making.
Some of the information generated in this way may be predictive of brain function after birth, for example in cases of Down's syndrome. Frequent spontaneous startles in a fetus at 27 weeks gestation and subsequently indicates a significant - even if moderate - intake of alcohol by the mother, despite her protestations to the contrary. Emotional stress of sufficient degree is associated with an increase in fetal movements, and the suspicion that this can lead to long-term anxiety seems to be justified. But enforcing abstinence from alcohol may lead to an increase in stress; the picture is complicated, solutions difficult to achieve.
Prenatal stimulation of the fetus is essential for normal development, and its availability is effortless. Millions of years of evolution have formed the uterus to provide the necessary stimulation for normal neural and behavioural development. Mothers are now being bombarded with programmes and devices which are claimed to improve the stimulation of and communication with their babies; The Fetal Phone would have the mother talk into a "microphone" tube connected via a pipe to her abdomen. "Send your voice straight to your baby in the womb", she is exhorted. But the mother's voice is transmitted naturally through her body to the baby without need of artificial amplification. The money would be better spent on nappies.
As more is understood regarding the importance of the prenatal period for development many dilemmas will be raised, some of which will not easily be resolved.
PH: Chemosensation relates largely to the flavours of the foods which a mother eats and which arrive in the amniotic fluid from the 15th week; the fetus learns these, and is familiar with them after birth. The exposure of babies to substances after birth exclusively does not lead to long-term preferences, whereas exposure both before and after birth (for example in breast milk) is likely to do so; animal experiments suggest that this is particularly strong in the case of alcoholic drinks.
PH: It is impossible to know the stage of pregnancy at which the fetus begins to interpret a sensation as pain, with the emotional component which that requires. Perhaps this is at 24 weeks gestation, when thalamo-cortical connections are made.
NM: The opportunity to carry out a randomised controlled trial of ultrasound is long past, since it is so completely embedded into the culture that it would be impossible to recruit a control group. PH: Apart from an early trial confirming that ultrasound examinations have no adverse effect on hearing, I am unaware of any research which has been set up to look for long-term effects, and the fact that such research is labour intensive and expensive discourages funding.
Faced with pressure from midwives to undergo routine ultrasound examinations some women refuse it on the basis that they would not accept termination of pregnancy if an anomaly was found; there is anxiety that the increase in diagnoses of autism has been caused by ultrasound, but this has not been proved. Research into the low use of alcohol and smoking, probable causes of harm, could generate information on ultrasound effects, but these are not currently a focus. PH: It is unlikely that the combined effects of alcohol and drugs such as as crack cocaine will be studied, as it would be impossible to achieve a 'clean' result, even if - as is unlikely - one could get the necessary consent. NM: It may seem reasonable to test the babies' urine for the presence of drugs at birth without consent, but this is unethical. We need informed consent, and conditions in the labour ward militate against our getting this.
Is it necessary to inform parents when ultrasound examination at 18 to 20 weeks gestation shows apparent abnormalities - dilated renal pelvis or ventriculomegaly in the brain - which are unlikely to be harmful, and when this information is likely to be the cause of up to 20 weeks of needless anxiety? PH: We are finding numbers of choroid plexus cysts, and as directed by the hospital ethics committee we do tell the parents. Sadly our reassurance does nothing to relieve their huge concern. It would be unethical not to tell parents; life is full of uncertainties, and new technologies throw up information which we are obliged to share with parents. NM: Even when an abnormality known to be harmless is found, it is the right of the parents to know of it; their distress is unavoidable. PH: The key has to be appropriate individualised support for these worried parents; unfortunately this is not widely available. NM: Only after the study of 500 cases would one be in a position to provide reassurance. We must convey clearly to the parents the concept that routine ultrasound scans are intended to check that the baby is normal, not merely to confirm normality.
Despite this opinion two delegates expressed the view that to give parents this sort of information is worse than unnecessary - it is cruel. NM stated emphatically that this view is paternalistic and unacceptable. PH: Obstetricians tend to give parents all available information in order to cover themselves against the later discovery of an important abnormality; this may or may not be due to medico-legal considerations. The distress of parents in these circumstances renders them quite unable to take in further information for a period of time, although counselling is essential; some delay is therefore necessary and unavoidable. A delegate stressed the importance of extended follow-up of apparent abnormalities.
PH: The size and complexity of our consent forms proves to be a barrier to understanding. When parents refuse to consent to investigations of their babies which the professionals regard as necessary it is important to avoid bullying , but to provide full information upon which a change if mind may depend. They should understand that if the baby becomes or is ill and they continue to refuse, then social services may have to be called in.
NM: Interventions in pregnancy such as premature delivery give rise to the ethical dilemma that we lack the critical information proving that the intervention makes a difference.
NM: I have seen the effect of religious belief and practice in Saudi Arabia, where the doctors are entirely reluctant to withdraw treatment from babies who have no prospect of survival; this distresses nursing staff who are largely recruited from the Philippines and the Indian subcontinent. Where there are differences of opinion within the neonatal team preventing consensus, the best advice seems to be that the views of the most experienced professionals should override those of staff with little experience. When there are disagreements on care between neonatal nursing staff and the doctors we invariably take account of the views of the nurses; but we must accept that the doctors have ultimately to take the decisions. Unit rounds involving all the consultants and the nurses with their various opinions are invaluable.
NM: The 6-year follow-up after the EPICure study enables us to take a view on the the care of very preterm babies, and we are looking at a cut-off at 25 weeks gestation, before which we would prefer to avoid intensive care. However, when babies are born at 23-24 weeks in good condition we tell parents that we will give them the best care possible; if they are in poor condition we say that we will not put them and their baby through the intensive treatment which in our experience is unlikely to result in his survival. The key facts which we provide to parents are that at 23 weeks the survival in our unit is 6 to 10%, and that 50% of survivors will have a disability. We point out that this is based on a study which is due to be repeated. If withdrawal of care is agreed at 25 weeks or less we can predict that the babies will die; babies in very poor condition at 27 or 28 weeks are likely to breathe spontaneously if care is withdrawn, and the ultimate outcome then depends upon the baby. We always treat babies which demonstrate vitality, however early in their birth. Yes, we are playing God. My guess is that at 23 weeks about half of the parents will agree to withdrawal of care; this falls to about 10% at 24 weeks.
A neonatologist pointed out that it is quite possible to have a protocol on the withdrawal of care where the neonatal team is stable, and the views on this of each member are well known; this makes it unnecessary to have a rushed consultation each time the question arises.