Press Release: Tafida Raqeeb, International Disagreement and Controversial Decisions About Life Support

by Dominic Wilkinson @Neonatalethics

 

This week the legal case around medical treatment for five-year old Tafida Raqeeb has begun in the High Court. She sustained severe brain damage from bleeding in the brain seven months ago. Her parents wish to take her to a hospital in Italy for further treatment, while the doctors at the London hospital caring for her believe that it would be best to stop life support and allow Tafida to die.

 

In a previous press release, I addressed several common questions about the case:

  • This seems to be another case like that of Charlie Gard and Alfie Evans. How common are cases of disagreement in the medical care of children?
  • Why do disagreements occur?
  • Why don’t parents have the final say about treatment?
  • Who is right in Tafida’s case, her parents, or the doctors?

 

There appear to be two central questions in her case –

  1. Is there any realistic chance of her condition improving if life-support continues?
  2. If Tafida’s condition does not improve, should treatment to keep her alive continue, or should it stop (particularly, if her parents do not give permission to withdraw treatment)?

Medical disagreement

The first of these questions is a medical or scientific question. There appear to be different views about whether Tafida’s condition might improve with the passage of time. Tafida’s parents believe that they have seen signs of improvement. The Royal Bart’s hospital doctors believe that further treatment would not lead to any benefit for Tafida.

Where there are different medical opinions, it is important to look at the expertise of those who are providing them, and the evidence that they are using to come to their opinion. (In the Charlie Gard case, one central issue was that the overseas doctor providing an opinion had never examined Charlie. This was one reason given in court for placing less weight on his view about Charlie’s situation). There may be different views internationally on medical questions because people have different experience, or use different treatment techniques. It is difficult for outside observers to comment on this medical question, since it is very dependent on the specific details of Tafida’s condition. As noted in the previous press release, one of the challenges in commenting on Tafida’s case is that there is limited information about Tafida’s medical condition that is publicly available.

Importantly, it now seems clear that the doctors in Italy are not offering any new treatment or different treatment. Vikram Sachdeva, one of the lawyers representing Tafida, has apparently indicated that the Gaslini hospital is not offering experimental treatment (as was the case for Charlie Gard), rather that they would continue life support as long as Tafida was not ‘brain dead’.

 

Ethical disagreement

The second question above is an ethical question, not a scientific question. Indeed, it seems that this is the main question at the heart of the case.

There can be different views internationally about what to do in very sad cases like that of Tafida Raqeeb, Charlie Gard or Alfie Evans. In some countries life support might be continued indefinitely for patients who with profound brain damage, even if there is no chance of improvement. In other countries, like the UK, there is a feeling that this is sometimes the wrong thing to do – treatment may prolong life, but may be doing more harm than good. Why are there these international differences?

One difference is that some countries place more emphasis on the importance of ‘quantity of life’ – reasoning that it is always better to keep someone alive longer. Other countries place more emphasis on ‘quality of life’ – reasoning that sometimes it may not be best for a patient to keep them alive, where their quality of life is very low. The UK courts have always emphasised the ‘sanctity of life’ principle – but have also considered that in some situations it is not in a patient’s best interests to have life-prolonging medical treatment.

Another difference between countries is in how much weight they place on the views of parents or family members. Some countries will never stop treatment if parents or family members wish it to continue. Other countries, like the UK, take the view that parents or family members cannot demand treatment that would be harmful or against the patient’s interests. In those countries, doctors might seek the help of a court if they cannot reach agreement with a family. (Of relevance, contrary to one claim made by the family this week, doctors in the UK would never stop life support against the wishes of family members without seeking a court order).

Finally, one important difference between countries arises from the use of limited medical resources. There are only a finite number of specialist intensive care beds in health systems like the NHS. Prolonged use of an intensive care bed may mean that another child is unable to be admitted to intensive care. (For example, surgery may need to be cancelled, or they may need to be transferred to a hospital far from their home). In situations where a child has an extremely low chance of ever recovering to benefit from that treatment, prolonged intensive care may be ethically difficult to justify. Those sorts of concern can be very different in health systems that are privately funded, though even in those systems, resources are not infinite.

 

It is interesting to know that there are different ethical views internationally about what to do in cases like that of Tafida Raqeeb. It is important for both doctors and courts to carefully consider these alternative perspectives, and to assess whether there is reasonable disagreement about what would be best for the child.

If there is a genuine prospect of Tafida improving, and she is not suffering from being kept alive artificially in intensive care, it would be the right thing to do to transfer her to the hospital in Italy.

However, it also seems quite possible that continued life support would offer no benefit to Tafida, and may be causing her to suffer. If that is that case, it would be wrong to transfer her overseas. As noted by Katie Gollop, (one of the lawyers representing the trust): “If it is not in her [Tafida’s] best interests in London, it is not in her best interests in Cornwall, Leeds, America, Rome or Canada or anywhere else.”

 

Dominic Wilkinson is the co-author with Julian Savulescu of ‘Ethics, Conflict and Medical Treatment for children’, published by Elsevier in 2018

The outline of the book is copied below

What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents’ wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new “dissensus” framework for future cases of disagreement.

Full-text of the book is available (open access) here

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4 Responses to Press Release: Tafida Raqeeb, International Disagreement and Controversial Decisions About Life Support

  • John Scott says:

    Central to medical decisions about further treatment should be the basis on which that decision is made. Futility or possible harm? Different bases might yield different decisions as I argue in wooler.scottus

  • Lynn says:

    Should we look at this in the context of “ ITU tourism “? Patients being shunted around the world because at the heart is an inability of families to accept that they will never recover?

  • Marco Vergano says:

    Dear Dominic,

    thank you for your usual clarity in pointing out the central questions of the case.

    I would just like to add a couple of remarks:

    1. when you examine different attitudes toward the preservation of quality of life versus the preservation of the quantity of life, although they may be more common in a specific country, they remain individual preferences, or sometimes “institutional” preferences (eg many Catholic hospitals). For sure in Italy it is more likely that a randomly picked pediatric intensivist would be “pro-life” compared to the UK, but I am sure that many Italian intensivists would agree with their colleagues at GOSH.
    Similarly, I believe that cases like this constitute the tip of the iceberg, and we cannot be sure of the prevalence of pro-life UK clinicians, as all the cases that don’t proceed to the courts remain invisible.

    2. I agree that ““If it is not in her [Tafida’s] best interests in London, it is not in her best interests in Cornwall, Leeds, America, Rome or Canada or anywhere else.”
    Equally, I think that “if there is a genuine prospect of Tafida improving, and she is not suffering from being kept alive artificially in intensive care”, it would be the right thing to keep her on life-support in the UK, rather than transferring her overseas where no other treatment would be offered.

    Marco

  • Ian says:

    The choice of arguments and presentation continue to use a great many emotional elements to drive ethical conclusions which deny life chances – somewhat like the soldier in the battlefield killing a wounded comrade (or opponent) as a mercy because they are immediately judged too badly wounded to survive the prevailing conditions.
    The differences between societies (constraints of a social or financial nature) indicative of producing differing approaches highlight similar issues and do seem to deserve a greater focus, because the decisions being drawn in the book appear to be attempting (unrecognised or because it is a joint effort from within a constraining system – to which its aim is to provide a methodological answer) to merely sustain and justify that social systems responses; Even though that particular issue itself is clearly illustrated as causing difficulties in examples provided. Is it not rather paradoxical that providing an ethical method to address various difficulties of life can so reveal antithetical thinking about a fundamental foundation of all life and its ongoing struggle?
    Social bias comes to mind but that does not seem to correctly fit.

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