Press Release: Tafida Raqeeb: Right Outcome, Wrong Reasons

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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12 Responses to Press Release: Tafida Raqeeb: Right Outcome, Wrong Reasons

  • Alberto Giubilini says:

    It is not clear who is going to pay for this in Italy though. From what the Governor of Liguria (the region of the Gaslini hospital where the child will be transferred) it seems it will be paid for by the Italian National Health System. But I cannot find any source confirming this. In any case, one problem is that under current Italian laws life sustaining treatment, once started, cannot be withdrawn (unless parents request it). This would apply in this case regardless of parents’ funding availability. If parents run out of funding, the public health system, i.e. Italian tax payers, will have to pay for it.

  • Julian Savulescu says:

    As I understand it, it is funded by a Saudi Prince, but I haven’t confirmed this.

  • Helen Franklin says:

    Surely, if you make distributive justice the key factor in decision making relating to children who will not recover, then the rich or the sponsored will live and the poor will die, likewise, if money is raised through crowdfunding for treatments the NHS will not provide, then living and dying will depend on parental pitch – how is any of this fair and just??

  • Julian Savulescu says:

    Justice relates to access to benefits that matter, that people have a claim to. It is not a matter of justice that someone is denied something to which there is no legitimate claim. For example, in the case of Jahi McMath, parents kept her biologically alive for years despite being brain dead. That is not an injustice to those parents who are not offered the opportunity to continue to ventilate a brain dead child in a publicly funded health system. The same goes for persistent vegetative state. If it matters, then state should provide fair access to it; if the benefit is small or non-existent, then it doesn’t matter if some buy it and others don’t. Justice does not require providing everything to everyone.

  • Helen Franklin says:

    I agree, but if justice relates to benefits that matter as provided by the state, the state needs to develop a much more coherent framework to clarify what these actually are in medical disputes and who is benefitting, the parents or the child – by your definition, if other states are willing to provide ongoing treatments, does this mean that they are more just?

    In relation to infants, I think decisions have to be much fairer across the board and seen to be so, several infants in broadly similar situations in the courts have been the recipients of different judicial decisions, depending on the philosophical or religious beliefs or the wishes of their parents, where is the justice in that?

  • Julian Savulescu says:

    I agree. If other states are willing to provide treatments, they may be richer, have different values, be more just or be mistaken.

  • Julian Savulescu says:

    Oh, I completely agree that it is unjust discrimination to positively discriminate on the basis of the presence of religious beliefs. The decision in this case to provide treatment was based in significant part on the parents’s Islamic beliefs about sanctity of life. If similar treatment is not provided to parents who request it on non-religious grounds (eg they believe treatments might be developed in the future), then that is discrimination against secular beliefs. This kind of proreligious bias is unjust: either the treatment is available on objective interests based grounds (regardless of the nature of the parent’s reasons), or it is not available to anyone. To provide if you have a religious reason, but not if the reason is not religious, is a pernicious and widespread form of discrimination in medicine. Jehovah’s Witnesses get EPO and blood conserving surgery. Those who request the same measures out of self interest don’t get them.

  • Marco Vergano says:

    I agree with Alberto that it is not clear who is going to pay for Tafida’s treatment in Italy.
    The Gaslini Hospital is part of the Italian National Healthcare System, so – according to usual EU agreements – the Italian SSN would ask for a refund to the NHS, the same as if an Italian citizen were admitted to and cured at a British hospital.
    I don’t know if in this particular case the agreement will be somehow different.
    I think this is a crucial point, that could make the issue of distributive justice completely irrelevant, unless a private donor were willing to support the treatment indefinitely.

    Also, I strongly disagree with the fact that “under current Italian laws life sustaining treatment, once started, cannot be withdrawn” unless brain death is diagnosed.
    Both the law (in particular Law n. 219/2017, on “informed consent, advanced directives and advanced care planning”) and our national best practice recommendations allow treatment withdrawal, once further treatment is not judged to be in the patient’s best interest. It remains a clinical decision, in every single case. So the statement by the clinicians at Gaslini Hospital is both misguided and misleading, for sure not an accurate representation of the Italian situation.

  • Nicola Latronico says:

    Marco Vergano rightly emphasizes that withdrawal of treatments that are no longer beneficial for patients is not only possible but it is legally due, according to the Italian law, if required by the person. In the GIVITI study published almost 10 years ago (Bertolini et al. Intensive Care Med 2010; 36:1495–1504), a treatment limitation preceded 62% of deaths, so withdrawal of treatments is not a recent achievement in Italy. The Tafida’s case is a different situation deserving attention, as the family is asking the treatment to be continued. However, the Alberto Giubili’s assertion that in Italy “life sustaining treatment, once started, cannot be withdrawn” is incorrect.

  • Alberto Giubilini says:

    My understanding of the relevant Italian legislation (and its accepted interpretation) is that life sustaining treatment on a non-competent individual can only be withdrawn if it is taken to be not in the best interest of the individual. This is not the case of Tafida Raqeeb according to the the professional judgment of the doctors of Gaslini’s hospital. It might not be in her best interest, but it does not go against her best interest either, as far as we know (since it seems she is not suffering, as far as I understand). If parents oppose the withdrawal of treatments, my understanding is that treatment in this case cannot be withdrawn. Is this incorrect?

  • Alberto Giubilini says:

    sorry, I meant to say that treatment can only be withdrawn if it is taken to go against the best interest of the patient, according to my understanding of the legislation

  • Marco Vergano says:

    Alberto, you are right. But the situation your are depicting is exactly the same in Italy and in the UK. The treatment on a non-competent individual can (and should) be withdrawn if it goes against his/her best interest.
    I totally agree that, if the child does not appear to be suffering, pursuing life support might not be in her best interest, but it doesn’t go against it either.
    But for sure it is wrong to claim that in Italy life sustaining treatment can be legally withdrawn only after a diagnosis of brain death, as it is stated in the judgement (section n. 15 and 16).
    Both in Italy and in the UK, if parents oppose the withdrawal of treatments, the irresolvable disagreement can be solved only by a Court.

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