Overruling parents and allowing infants to die

Over the weekend a nine-month old infant, baby ‘OT’, died following a court ruling that allowed doctors to remove life support. As discussed in a post last week, his parents had wanted treatment to continue, but the court ruled that the hospital could withdraw the breathing machine that was keeping OT alive and allow him to die.

This case is interesting in that the courts reached a different conclusion from other recent and widely publicised cases – those of baby MB and Charlotte Wyatt. In those cases the courts supported parents requests for life support to be continued or to be provided if needed. But in other cases courts have ruled that doctors can withdraw life support from children or adults against the wishes of family (for example the case of Baby L in New Zealand).

It is sadly all too common for medicine to reach the point where it can no longer provide benefit to ill infants or children. In such situations doctors and parents often decide together that the best that can be done for the child is to keep them comfortable, and allow nature to take its course. The ethical justification is that it is not in the child’s best interests to continue to provide life-saving treatment. The burdens of illness and of treatment outweigh the benefits.

But parents, like those of OT, may disagree with doctors about how much a child is suffering, about whether a small chance of recovery justifies continued treatment, and about whether a life with severe disability provides benefit to the child. Doctors are generally reluctant to go against the wishes of parents, and in many cases treatment is continued. It is rare for cases to come to the courts, and as indicated above, even in such cases the courts may or may not decide to continue treatment.

Here is a puzzle then. If treatment may be withdrawn from an infant because it is against their best interests to provide it – how can it be permissibly continued if the parents disagree? Many children like MB or Charlotte Wyatt are allowed to die in hospitals, and this is generally felt to be ethical. But how can treatment be both in the interests of the children (justifying its continuance), and simultaneously against their interests (justifying its withdrawal)?

In truth there is no simple answer to the question of when treatment is against the best interests of a child. There is no medical test that measures interests, and no agreement about how to weigh them. Parents have an important role to play in the value judgements about whether ongoing treatment is worthwhile.

There are different thresholds for different types of judgements. When the outcome seems poor for a child it may be permissible for treatment to be withdrawn. If the outcome is worse we may feel that treatment should be discontinued, and parents should be encouraged, supported and counselled to come round to treatment withdrawal. (We may however still permit treatment to continue). But if the outcome is worse still we may feel that to continue life support would be certain to harm the child – it would be a form of child abuse, it is obligatory to stop treatment.

Only at this lowest level should courts overrule parents and order the doctors to allow a child to die. The courts use a different version of the best interests standard from that usually applied by doctors when they make  decisions to withdraw life support. But then that is appropriate.

Baby 'OT' dies after court rules his life-saving ventilator must be switched off Telegraph 22/03/09

Parents 'deeply distressed' baby OT will be left to die Times 210309

Couple's distress at baby ruling BBC 21/03/09

Withdrawal of neonatal mechanical ventilation against the parents' wishes. Journal of Paediatrics and Child Health Isaacs, 1996

Internet appeal baby dies BBC 28/09/1998

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