This happened in a major obstetric hospital in England. I have visited another leading city hospital in Africa where the pressure on the only neonatal unit was such that no baby under 1,000gm was offered ventilation. Illegitimate preterm infants (mostly born to teenagers) would not be admitted to that unit unless the mother had attended ante-natal clinic or was willing to breastfeed. The high cost of technological care enforced such selectivity.
These illustrations highlight for us the two major areas of dilemma encountered in paediatric practice worldwide, namely:
- dilemmas of life and death and
- dilemmas of conflicting interests
The final resolution of dilemmas about life and death will be affected by the significance given to human life. Solving dilemmas when interests conflict will depend on how we gauge and rank priorities.
How can we make up our minds?
Non-Christians decide ethical dilemmas by trying to work out what it is most reasonable to do. One currently popular way is to take four principles: autonomy (individual freedom to choose), beneficence (being kind), non-maleficence (doing no harm) and justice, and to try and strike a balance between them.
In matters of life and death, ranging from abortion to euthanasia, the patient's autonomy has come to be given weight enough almost to constitute a right. When two sets of rights conflict, though, the dilemma still is how to exercise justice.
Children are said not to have autonomy until they have become self-reflective, which takes years. Until then, their guardians have the legal right to choose for them. Yet even very small children can be heard protesting over this with cries of, 'It's not fair' (ie 'It's unjust'). Not many children realise that a lumbar puncture is beneficent, not maleficent! Use of the four principles in problem-solving can still leave indecision.
There are, of course, laws which, for the most part, still protect extra-uterine life. British law also includes 'the neighbour principle',which aims to promote reasonable behaviour between neigbours. Yet it was a high court judge who said,'If I were a Down's baby I wouldn't want to live'. He seemed to think that this was a neighbourly remark! We must learn not to judge by appearances if disabled babies are not to be made disposable objects.
Why is human life so special?
The Christian answer to this is that all life is God's creation (Gn 1:20-25) but that human lives are uniquely made in his image (Gn 1:27). We will therefore be honouring him by honouring his image in any human being.
Theologians have always speculated about what it means 'to be made in the image of God', but one possibility always comes home to me when I see proud parents and their new baby getting to know each other. In all creation, only the human mother and her baby can be face to face as the child feeds. In turn, a healthy full-term infant chooses to gaze at a face in preference to any other pattern, seeking eye-contact and even smiling with pleasure within hours of birth. It seems that God, as a dynamic trinity himself, has uniquely designed human parents and child to be another threesome, so reflecting his own image in each of them. Without loving intervention, babies sometimes die of broken hearts and I have seen this happening in Eastern European orphanages.
God has designed us not only for each other but for a thriving relationship with himself. Without this, we will wither away and die spiritually. Infants are at the mercy of others, but God has made us free to choose whether or not we turn to him; to learn to love him and also to live in harmony with each other. He warns us, though, that not to do so will have a fatal outcome (Dt 30:15-20).
The Christian message is that God took pity on the deadly consequences of our autonomy for 'each of us has turned to his own way' (Is 53:6). God's entry into our world as the Lord Jesus showed in the flesh what 'the image of God' is really like (Jn 14:9). He made the costliest of interventions on our behalf by suffering the death that we deserved. This made it possible for us to come back to life through a restored relationship with God (Rom 5:8-11). His resurrection was proof that his sacrifice was acceptable and a sign of the transforming power of his Spirit.
The intention is that, restored as God's children, we are to grow up to be like Jesus, sharing his sufferings as well as his glory (Rom 8:9-17,29), and finding that his Spirit helps us to walk in his ways (Gal 5:16-25).
Christians in medicine will have this backdrop in mind as they contemplate the destiny of human lives. To guide us, both in thought and in life-style, the Lord Jesus himself gave us two major precepts to live by:
'Love the Lord your God with all your heart and with all your soul and with all your mind.' This is the first and greatest commandment. And the second is like it: 'Love your neighbour as yourself.' (Mt 22:37,38). It is the blending of these two commandments in particular circumstances which lies at the heart of our dilemmas.
Dilemmas of life and death
Here there may be conflict between the value of life and the burden likely to be inflicted by medical intervention. The dilemma pivots on how we can best show true love to a 'neighbour' whose life is already threatened. To work hard for survival could involve even more suffering. Such crises can arise when protracted resuscitation (as with continued ventilation) risks serious central nervous system (CNS) damage. This can be acute or sub-acute.
The extremely preterm infant falls into this category, as does one with acute or advancing hypoxia. A child of any age who has suffered brain trauma or oedema or is in cardiac or respiratory arrest raises the same questions.
Less urgent can be to decide whether unrewarding aggressive treatment, aimed to cure, should now give way to palliative and later terminal care. Without detailing all the relevant conditions, this would include:
severe disability (congenital or acquired), inevitably progressive disease (such as muscular dystrophy or cystic fibrosis), excessively burdensome treatment (such as cytotoxic therapy) and end-organ failure.
The decision-making process
The resolution of life and death dilemmas must first mean being as sure as possible about accuracy of diagnosis and prognosis, as revealed both by previous experience and up-to-date literature. Whether a condition is treatable or not and whether intervention is urgent or can be delayed, are both usually evident from the nature of the problem and the state of the child. To gauge whether possible treatment will be, or has already become, excessively burdensome may have to be decided upon individually. When a clinical decision is not clear cut, it is wise to have more than one senior mind sharing in it. If doubts remain and facilities permit, it is better to opt in favour of continued efforts to save life until there is greater clarity.
A bright (14 month old) infant had a poor outlook because of serious chest deformity and scoliosis. He received spinal surgery and halo traction, hoping to avoid the paraplegia which still developed. He had already spent months in hospital, 40 miles from his family when, after recurrent chest infections, he went into respiratory failure. What would be best for him? The anaesthetist knew that intubation had already been made difficult by his deformities. It was clear that, even if achieved, ventilation would not be curative. After discussion with three consultants, it was decided to keep the child as comfortable as possible, but no longer to fight for his life. He died in his mother's arms.
In many such decisions, all along the line there will be professional inter-relationships going on as well as attempts to sustain the personal ones for and around the patient.
Loving our youngest neighbours
If we are to love our smallest neighbours, we must try to determine what is important to them. Attention to their physical needs can obviously be life-saving, (or life-prolonging) but there is more to life than anatomy and applied physiology.
Deprivation, with consequent emotional damage and even death, can follow the sustained treatment of children as mere bodies.
Most reputable neonatal units in UK now encourage parents to stay involved during attempts to save a baby's life. If ventilation becomes futile the last moments of a baby's life are then, if possible, passed in the parents' arms. Ventilation may also be discontinued in older children, for example if showing no response after a head injury. Some parents may decide to donate their child's organs. They will need care and support as they consider this.
Severely disabled babies with irreparable problems, need special care and even short lives can be lived in a loving atmosphere. Parents, shocked and grieving, may at first shrink away, needing time and support to decide what to do but in the end, most take their babies home. Very sick infants sometimes need drugs such as analgesics, or have to be fed by tube. Ongoing support is vital, particularly for those who go on to survive for years.
When a child's condition deteriorates and is no longer responsive to active therapy, much can still be done. Palliative drugs can control unpleasant symptoms. Their use and purpose should be tactfully explained to parents and an interested child.
A child's level of understanding will vary with age, intelligence and experience but until insight develops, certain forms of therapy can feel like punishment. To avoid such confusion we need to tune in to the child.
A five year old with cancer asked his mother if he was going to die. She said,'Yes, you are poorly and you will die before we do, but it won't be today'. An older child could have asked, 'When, then?' but a young child's mind does not range far ahead, so he calmly accepted her answer. This had come so much better from his loving and trustworthy mother than from a stranger.
Palliative treatment is not designed to kill. Pioneered by Christians, it aims to respect, comfort and enhance what is left of life. A teenager I once knew was kept on appropriate doses of morphine for months in order to relieve the dyspnoea of his advanced cystic fibrosis. This allowed him to get about and enjoy what was left of his life.
Good palliative and terminal care can provide a very special time of closeness for families, burdened until now by the demands of aggressive therapy. It may also give time to restore damaged relationships with others and with God.
Christians involved in any of these life and death scenarios have the relief of asking for God's wisdom and the responsibility of acting as personal channels for his love.
Dilemmas of conflicting interest
Unlike dilemmas of life and death most dilemmas of conflicting interests are faced out of the clinical arena by those who may not be well briefed about the unseen needs of those being discussed. They can sometimes abuse them, even when intending to act in their best interests.
In paediatrics, this type of dilemma is broadly speaking a matter of child protection versus the risk of child abuse and pivots on the caregiver's understanding of a child's viewpoint.
In paediatric practice,such dilemmas arise over matters of consent (informed or enforced), confidentiality (keeping secrets from the child as well as telling the child's secrets), and cost (whether what is cost-effective is most effective), be this the economic or emotional (ie personal) cost.
Even without a detailed analysis, it should be clear from these headings that such dilemmas cover areas such as:
- procedures and research on children (who gives consent?);
- adoption, serious illness or disability (when should the child be told?);
- case conferences or court hearings (should a child's private confidences be made public?);
- and whether the hidden costs are included when assessing cash costs (if a child from X-town needs costly treatment in Y-city, are expenses granted for maintaining family contact?)
Global inequalities in care also feature here.
It requires time and skill to explain procedures to a child and to seek co-operation. Yet to be held down and forced to submit to the incomprehensible is to experience terror now and nightmares later. Decisions taken by adults, can leave children scarred. Being cross-questioned in court, or being sent into care, can feel to a child like hostility or rejection. Professionals need to learn to think, to listen and then to explain in a child's terms.
Not all decision-makers in these areas necessarily understand children, but the first aim should be to strengthen a child's life-long bonds before taking action which would weaken them. Of course, if parents are being persistently destructive, hard choices may demand expert opinions. To avoid the disruption implicit in serial short term placements would be to respect a child' s need for long term security.
When demand exceeds supply, economies must clearly be made. Market economies adopt a utilitarian approach to cash distribution, giving more funds to what seems most efficient. League tables indicate which hospitals have scored most goals, yet to take throughput as a measure of efficiency and then to reward it is not necessarily justice. Some operations take longer than others. Rushing patients through clinics may multiply their visits rather than sorting out their problems.
A materialistic outlook confuses quality with value. One league table in recent use (the QALY concept) adjusts the funds to be allocated according to the assumed quality of a recipient's life. It means that disabled lives, often costly to care for, are offered a smaller slice of the monetary cake than those more obviously curable.
Yet anyone who knows a disabled family will know too a hard-won reservoir of patience, love and inspiration. It is interesting to find how many carers, in schools or organisations for disabled children, have known such a person within their own families. To produce carers in an increasingly careless society is to be remarkably cost-effective! Yet to receive better funding would mean to present convincing statistics. (Could this be a job for one of our readers?)
Materialism is one of the idols which God has warned us against . If economists reckon only in cash terms and ignore hidden social and emotional costs, serious spiritual alienation can result. It takes righteousness to exalt a nation (Pr l4:34).The alternative is moral bankruptcy.
Dilemmas about life and death have become curiously intermingled with (and have themselves helped to produce) some of the dilemmas about conflicting interests. Not only have many of the technological advances in medicine gone forward before relevant ethical guidelines were laid down, but demand for them already exceeds supply.
The escalating cost of intensive neonatal care provides one of many examples. The commonest cause of extreme prematurity is social deprivation, with smoking during pregnancy as another major factor. Worldwide, to save a baby of very low birth weight costs about as much as the price of a modest local house. It would seem logical to redistribute resources so that social improvement and preventive intervention were given backing proportionate to that consumed by technology. Meantime it costs very little to facilitate personal care.
Advanced medicine may itself experience cash crises. Not long ago, a health authority discontinued a leukaemic child's treatment on the realistic grounds of its being ineffective and too costly. The child later died after continuing her battle for life, privately funded. Others see their best interest in opting out of such a struggle. Computerised data is used in one Australian state when deciding whether consenting AIDS patients are yet symptomatic enough for euthanasia.
The case for the counselling and personal care which goes with palliative medicine needs universal restatement. Although there is an emotional and economic price tag, it costs less than futile intensive care. Although euthanasia may be cheaper in cash terms, it too has huge hidden costs.
Whenever the image of God in humankind is ignored life is devalued. Love of neighbour must be tied in with love of God if our personal and public treatment of each other is to be truly compassionate, whether or not there are also dilemmas to be faced.
Relevant CMF literature:Wyatt J,Spencer SAS. Survival of the weakest. Order no:0136 (£2.00)
Wing A. Quality adjusted life years Order no:0134 (£1.00)
Cook D. The medical maze - a Christian approach to health care ethics. Order no:0141 (£1)
Twycross RG.The dying patient. Order no:0139 (£1.00)
Euthanasia - an edited collection of articles from the CMF Journal. Order no: 0149 (£3.00)
See also:Johnson A G. Pathways in medical ethics (Edward Arnold,London.£7.95) Order no:1204
Goodall J. Children and grieving. (Scripture Union, London.1995. £4.99)