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Posted on October 3, 2019 at 11:09 AM

Written by Professor Julian Savulescu

Dominic Wilkinson describes well the decision to allow a severely brain damaged girl, Tafida Raqeeb, to travel to Italy to continue to be kept alive with artificial ventilation.

This is the right outcome. It appears as if Tafida is insensate or unconscious. If Tafida is vegetative, continuing treatment won’t cause suffering. So it is not harmful for her to be transferred to Italy at her parent’s request. (It would also be permissible to discontinue medical treatment.)

There is some chance she might experience something, in other words that she is minimally conscious. If she is minimally conscious, doctors would have to show she is unrelievably suffering in order to discontinue treatment in her interests. That has not been demonstrated in this case.

Medicine is provided to patients in their best interests. It is not clear, at least to me, whether it is against Tafida’s interests to continue to be kept alive. Italian experts cite a number of reasons to continue to keep Tafida alive, not least to clarify prognosis and to allow parents to come to terms with the situation.

However, the elephant in the room is that this case demonstrates the use of expensive medicine for extremely marginal benefit. It costs over £200 000 per year for home ventilation and over £600 000 per year for intensive care. The opportunity cost of providing this service is enormous. Compare to the 3 most expensive NHS procedures:

The most expensive surgery that the NHS does is “very complex intracranial procedures, 18 years and under, with CC Score 12+” (brain surgery on children) £40,936. For adults this procedure is £22,469.

Bilateral cochlear implants are the next most expensive, costing £37,904.

And complex instrumented correction of spinal deformity, 19 years and over, with CC Score 7+ is third at £35,106.”

Very roughly, you could provide this or give 5 deaf children cochlear implants, or 5 complex brain operations on children.

There are independent good reasons to stop treatment based on justice: there are not enough resources in the NHS to indefinitely continue treatment for so little expected benefit.

But this should not stop parents taking her to Italy at their own expense for continued treatment.

The religious beliefs of the parents (and their view of the sanctity of life), and evidence that, to the extent possible at such a young age, they were beliefs that were shared by Tafida, figured in the determination of the best interests of the child. But this shouldn’t be about religion. Jehovah’s Witnesses should not be able to refuse life-saving blood transfusions for their children according to their beliefs about the correct interpretation of the Bible. And parents should not be able to harm children, for example by female infibulation, according to their religious or cultural beliefs. It’s about the child’s interests, or distributive justice.

Treatment limitation and futility decisions are best made on grounds of distributive justice, not on grounds of a human being better off dead. Distributive justice did not figure in this judgement, or the Charlie Gard judgement or the Alfie Evans judgement. But it is the most valid reason for limiting access to medical treatment. It is easier to say A will derive more benefit than B, than it is to say that B is better off being dead rather than receiving medical treatment.

However, distributive justice will not prevent parents or patients paying for their own treatment in other jurisdictions. Children ought to be allowed to be taken to other countries for treatment provided that treatment is plausibly in their interests, or at least not against their interests.

Dominic worries that this case will open the flood gates to more conflicts between parents and doctors. Charlie’s Law aims to reduce this. In philosophical terms, we should avoid making contestable judgements about death being in the best interests of the patient. Instead we need an open and rational debate on the inevitable limitation of resources and distributive justice. Not every life that can be prolonged should be prolonged using limited life-saving medical resources.

Professor Julian Savulescu
Uehiro Chair in Practical Ethics
University of Oxford

Visiting Professorial Fellow in Biomedical Ethics
Murdoch Children’s Research Institute

Distinguished Visiting Professor in Law
Melbourne University

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