Is medico-legal paternalism still rife in UK paediatric best interest decisions?

By Michal Pruski.

The UK case of Alta Fixsler is reigniting the debate on paediatric best interest decisions in the case of end of life considerations. The two-year old’s Jewish parents want her to be transferred to Israel to be taken care of by clinicians sharing their religious and moral outlooks. Meanwhile the NHS trust taking care of her asked the court to make a best interest decision as they consider withdrawing life-sustaining care.

Over the last decade several high-profile cases of similar paediatric best interest decisions were heard in UK courts, such as those Alfie Evans, Charlie Gard, Tafida Raqeeb and Pippa Knight (as well as the recent adult case of the Polish man RS). While few would argue that courts should never be involved in such cases (especially if there is disagreement in the family), I wish to argue that the fact that we require courts to make best interest decisions in cases where there is family agreement and the family is not malevolent towards the child, this situation represents a vestige of medical paternalism that is enforced by the courts.

Dominic Wilkinson provided a thoughtful analysis, involving some of the above-mentioned cases, arguing that courts should be allowed to obstruct such transfers if they would result in harm to the child. He also highlighted that a debate surrounded these cases of whether the legal test should move from a best interest to a harm threshold. Many of these cases involve religious belief (which involve values hard to appreciate to non-believers), but even if they did not, the type of considerations that are involved in best interest decisions seem to be of the type that liberal states should be agnostic about. As Nathan Gamble and I have argued, parents should be allowed to make decisions if they are ‘1) prima facie caring, 2) can meaningfully engage with the relevant medical evidence for benefit and harm, and 3) intend the child’s health’. Best interest decisions pronounced by the courts that side with the medical team’s opinion, when parents meet these conditions, are hard to be interpreted otherwise than as instances of institutional paternalism. If in medical practice we accept logical opinion that conforms with a reasonable body of opinion, why must we seek best interest in these paediatric cases?

Wilkinson is right to highlight that ethical pluralism does not need to entail relativism, but in cases when we override the decisions of parents who meet the three above conditions it is hard to talk about pluralism – it makes parental consent seem to be a farce or masquerade. The three above mentioned conditions seem sufficient to protect the child from cases of abuse. Moreover, court decisions that withdrawal of life-sustaining care is permissible could still be made without the implication that care must be withdrawn. A grace period could be implemented for parents to arrange alternative competent clinical care for their child before such withdrawal would happen. This arrangement would provide a framework that would respect both the parents’ wishes and the opinion of the clinical team. The clinical team should have the right to conscientiously object to the provision of practices that they believe are not appropriate for the child, but (as in the case of other instances of clinical conscientious objection) should not be able to obstruct the parents from seeking care from competent practitioners that side with the parents. Such an arrangement might be particularly reassuring for parents now that the interpretation of burdens and pleasures makes best interest decisions more likely to favour withdrawal of care.

Finally, while from a legal perspective the regulations surrounding the best-interest cases are very different from those of abortion, from a philosophical perspective the contrast between those cases is rather odd. In the case of abortion, the mother has near complete (within the bounds of abortion grounds) decision power over the foetus’s life, with the best interest of the foetus not considered and the mother being able to seek further medical opinion indefinitely in cases where a doctor refuses to agree that she has grounds for obtaining an abortion. This is most striking in cases of severe foetal disability when abortion is permitted until birth. After birth, this situation drastically changes. What remains constant is that in both instances the UK system seems to err on the side of the death of the foetus or child (e.g. in Canada the system errs on the side of preserving life). This seems an odd situation to be in, considering that we are meant to be the healing professions.

We await to see which direction Alta Fixsler’s case will take.


Acknowledgement:  I would like to thank Daryl Taylor for help with proofreading this post.


Author: Michal Pruski

Affiliations: Cardiff and Value University Health Board

Competing interests: None declared
Social media accounts of post author:  @michal_pruski

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