It is regrettable that some neonates are born with life-threatening conditions or become seriously ill shortly after birth. In the majority of cases, the neonate's parents make decisions about their baby's care and treatment with the advice and support of midwives and doctors. On occasion, however, the views of the parents are at odds with those of the team treating the baby and a formal decision on the best interests of the neonate must be made, often by a judge of the Family Division of the High Court.
The test for best interests of critically ill babies is firmly based in common law and has been developed by the courts as cases have been brought for judgment over the last 30 years. Over that time, the courts have had the opportunity to consider each aspect of the care of critically ill babies and the test for best interests has become ever more sophisticated and extends beyond a mere balancing of the risks and benefits of continued treatment.
In the early cases, the notion of a best interest adopted by the courts was limited to the likely life expectancy of the child if treatment were to be given. In Re B (A Minor) (Wardship: Medical Treatment) [1981] a court ordered that intestinal surgery on a baby with Down's syndrome should proceed despite the objection of the parents because the baby would live at least a further 19 years if the surgery was successful.
Some 10 years later, the court refined the determination of a best interest to include the pain and suffering the baby would have to endure. In J (A Minor) (Child in Care: Medical Treatment) [1993] a profoundly brain-damaged baby with a very short life expectancy was not thought to be benefitting from treatment and both the parents and medical team sought an order allowing them to curtail treatment. The court held that denial of treatment to prolong life could only be sanctioned when in the best interests of the baby. The test that applied was based on an assessment of the quality of life of the baby and their future pain and suffering in relation to the lifesaving treatment.
No absolutist test
In J (A Minor) (Child in Care: Medical Treatment) [1993] it was argued that in the case of critically ill neonates, an absolutist test should be applied. That is, doctors and midwives should have a duty to continue life-sustaining treatment right up to the death of the baby. The court, however, found that even where the patient was a critically ill baby it was never the case that doctors and midwives had to continue giving treatment where it was clearly futile. What the court called the absolutist test would never apply.
A decision of the Court of Appeal in Re T (A Minor) (Wardship: Medical Treatment) [1997] saw much broader welfare, family and other non-medical factors adopted as part of the determination of a critically ill baby's best interests. T was born with a life-threatening liver defect requiring a liver transplant. His mother refused consent as she considered it was not in her baby's best interests to suffer stressful and painful invasive surgery. The judge at first instance considered medical evidence that the chances of success were good and held that the mother's refusal to accept the unanimous advice of the doctors was not the conduct of a reasonable parent.
‘The test for best interests has become ever more sophisticated and extends beyond a mere balancing of the risks and benefits of continued treatment’
The Court of Appeal held that the judge had erred in his approach to best interests as he had not weighed in the balance reasons against the treatment which might be held by a reasonable parent on broader welfare and family grounds than a clinical assessment of the likely success of the treatment. In the case of a very young child, the interests of the mother were intertwined with the interests of the baby. The court concluded the surgery should not proceed.
In A NHS Trust v MB and Mr & Mrs B [2006] similar grounds were used to justify the continuation of treatment in the case of a terminally ill baby who was unable to breathe unaided since birth and required positive pressure ventilation. The NHS Trust argued that his quality of life was so low and the burdens of living so great that it was in his best interests to withdraw all forms of ventilation. His parents, however, argued that a tracheostomy should be performed to enable long-term ventilation.
In common with all cases concerning children, the court held that the child's welfare was its paramount consideration (Children Act 1989 s.1). The court considered the quality and value to the child of his relationship with his family and found it was not in his best interests to discontinue ventilation with the inevitable result that he would die. He had age-appropriate cognition, a relationship of value with his family, and other pleasures from sight, touch and sound. Those benefits were precious and real and the routine discomfort, distress and pain did not outweigh those benefits.
However, the court also held that procedures that went beyond ventilation such as cardiopulmonary resuscitation, administration of intravenous antibiotics and blood sampling should not be provided unless the medical team thought it clinically appropriate.
‘The courts are aware that a declaration may restrict a health professional's ability to exercise clinical judgement. To avoid this, the court may use a permissive declaration’
A decision on a critically sick baby's best interests must be determined on wider grounds than benefits and risks of continued treatment. To make this determination, it is necessary to discuss the baby's best interests with the parents.
Referring the matter to court
Where parents strongly oppose the giving or withholding of treatment then, unless the situation is urgent, the matter will need to be referred to the court for a decision. Failing to seek the court's approval in these circumstances would be a breach of the child's right to respect for a private and family life under Article 8 of the European Convention on Human Rights.
In Glass v United Kingdom [2004] the mother of a severely physically and mentally disabled baby, argued that his right to physical integrity under the European Convention on Human Rights 1950 Article 8 had been breached when on his readmission with respiratory failure, the hospital insisted that he was dying and that diamorphine should be given to relieve his distress. His mother disagreed and objected to the proposed treatment in the belief that it would harm his chances of recovery. Despite her objection, diamorphine was administered, but his condition improved and he returned home.
The European Court of Human Rights found that treatment contrary to his mother's wishes breached the baby's right to physical integrity under Article 8 as the hospital had failed to seek the High Court's approval for the proposed treatment.
Permissive declarations
When the court's approval for a plan of care is sought, the method used to authorise treatment is by way of a declaration, where the court declares that the proposed treatment is lawful. A declaration is binding on the parties before the court and doctors and nurses are bound by their terms.
The courts are aware that a declaration may restrict a health professional's ability to exercise their clinical judgement. To avoid such a situation, the court resorts to the use of permissive declarations (A NHS Trust v MB and Mr & Mrs B [2006]). In a permissive declaration, the court authorises the withholding of treatment at the discretion of the care team. In Re Wyatt (A Child) (Medical Treatment: Continuation of Order) [2005] the intervention of the court was sought in respect of the medical treatment of a critically ill baby who had also developed an intermittent rasping cough and a viral infection. The only intervention would be intubation and ventilation, but the doctors argued that it would not be in her best interests as, essentially, it would be futile. The parents were of the view that if she were ventilated she would recover.
The court made it clear that, in the best interests of the baby, the care team should be able to refrain from having to intervene by way of intubation and ventilation. The authority was granted by way of a permissive not mandatory declaration so that at the moment the decision arose the care team could exercise their clinical judgement, in the baby's best interests, as to whether or not to withhold the treatment.
Conclusion
The test for determining the best interests of a critically sick baby has developed considerably since the 1980s, when a simple consideration of life expectancy was adopted. Now the factors to be considered go beyond a blinkered clinical assessment of the benefits and risks of treatment. The determination requires a more sophisticated consideration of the child's life expectancy, pain and suffering, the views of the parents, their relationship with their child, and what other pleasures the child is able to enjoy.