Professor Dominic Wilkinson, Professor of Medical Ethics, University of Oxford. Consultant Neonatologist
This morning, the High Court judgement around medical treatment for five-year old Tafida Raqeeb was published. Tafida sustained severe brain damage from bleeding in the brain eight months ago. Her parents wish to take her to a hospital in Italy to continue life support, 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.
Justice MacDonald concluded today that life sustaining treatment for Tafida must continue and her parents should be allowed to take her to Italy.
Caution
The legal decision this morning was based on careful weighing up of expert evidence specific to Tafida’s situation given over 5 days in a court room. The judgement has only just been released, is 70 pages long, and it will take some time to understand the full legal rationale for the conclusion. It is also important to know that this may not be the final ruling on the case. It is not clear yet whether the hospital will appeal against the decision.
The family
This decision will be an enormous relief to Tafida’s family. They have sought to take her overseas in the hope that she might recover, against the odds. In fact, the High Court heard evidence from medical experts both in Italy and in the UK that tragically there is little or no realistic chance of Tafida recovering. However, importantly, the High Court also heard evidence that the experts do not believe Tafida is experiencing any pain from the medical treatments that are keeping her alive. On that basis, and weighing up very carefully the finely balanced risks and benefits, Justice MacDonald found that it would potentially be best for Tafida to continue life-sustaining treatment and to take her to Italy.
Why is this decision important?
This decision makes it very clear that the courts in these cases weigh very carefully evidence from both sides. Doctors are not always right, and courts do not automatically agree with their opinion. Nor are parents always right. Their views do not always prevail. The court will weigh up carefully what would be best for the child in the individual circumstances.
Why is this decision different from those in the Charlie Gard and Alfie Evans cases?
Any legal decision about treatment for a child depends on the specific circumstances of the case – what would be best for that child. Charlie’s and Alfie’s situations were different, and because of that, judges reached different decisions.
There are several key elements to Tafida’s case, some of which were different from Charlie Gard and Alfie Evans:
First, Tafida has sustained brain damage, but her illness itself is stable and it is possible that with life-sustaining treatment that she could be kept alive for a long time.
Second, a critical issue in Tafida’s case was whether she would suffer harm from being kept connected to life support machines. In fact, it appears that Tafida’s brain damage is so severe that experts did not believe that she was capable of experiencing pain or discomfort from treatments that she is receiving. That is a crucial element to the case. It means that the judge found that it would not be harmful to Tafida to continue treatment and to transfer her to Italy.
Third, the court heard evidence that for children with similar problems and similar levels of brain damage to Tafida, in other intensive care units in the UK, if families wish it that doctors would sometimes continue artificial life-prolonging treatment.
Fourth, the treatment desired by Tafida’s family is entirely privately funded. This means that it does not draw on the limited healthcare resources of the NHS.
Wider implications.
This case does not change the law. Nor does it change the way that future cases of disagreement will be handled or considered by the courts. Tafida’s situation is a very special case. If there had been evidence that Tafida was deteriorating, was suffering from the treatments keeping her alive, or that no other specialised doctors in the UK would support continued treatment, the judge would potentially have reached a different decision.
However, health professionals and those working in intensive care in the UK may worry that this decision will lead to more conflict or make it more likely that disagreements will end up in the court. If that occurred, that would be deeply concerning – for children, families and health professionals.
At least two of the statements of differences between this case and Carhlie Gard and Alfie Evans’ seem to be incorrect on the basis of the judgements (I am not closely acquainted enough with them to judge the other two). Am I mistaken in that?
“Second, a critical issue in Tafida’s case was whether she would suffer harm from being kept connected to life support machines. In fact, it appears that Tafida’s brain damage is so severe that experts did not believe that she was capable of experiencing pain or discomfort from treatments that she is receiving. That is a crucial element to the case. It means that the judge found that it would not be harmful to Tafida to continue treatment and to transfer her to Italy.”
* in my understanding, in both Alfie Evans and Charlie Gard’s cases, it was believed that there was no pain experienced, and in Charlie Gard’s case no pain relief administered at all until the very end. In this case, it was also believed to be the case that she experiences no pain, but it is uncertain*
Fourth, the treatment desired by Tafida’s family is entirely privately funded. This means that it does not draw on the limited healthcare resources of the NHS.
*in both Charlie Gard and Alfie Evans’ cases, funds had been raised that meant that the desired treatment was not a burden on the NHS*
There are two morally relevant differences between the case of Charlie Gard and at least the cases of Alfie Evans/Tafida Raqeed:
1. Charlie Gard did not have structural brain damage; both Evans and Raqeed have massive structural brain damage.
2. In the case of Gard there was a proposed experimental treatment that might improve his condition (albeit with a very low probability of success). In both the cases of Evans and Raqeed, there is no intervention that will improve outcome.
If Raqeed is allowed to travel to Italy for palliative treatment, Gard should have been allowed to travel to the US for a 3 month trial of experimental treatment.
There is a difference between Raqeed and Evans in that, as I understand it, Raqeed sustained a single albeit very serious insult to her brain but does not suffer from a degenerative disorder. There is an argument to allow more time for the potential upward trajectory in the case of brain trauma to declare itself. This argument does not exist in the case of untreatable degenerative disorders where
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