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expert reaction to Tafida Raqeeb ruling from High Court

The High Court has ruled that Tafida Raqueeb’s parents are allowed to take her abroad for treatment for her severe brain damage.

 

Dr Giles Birchley, Research Fellow in the Centre for Ethics in Medicine, University of Bristol, said:

“The judge took a number of factors into the balance in deciding this case.  He found Tafida has a minimal awareness of her surroundings, and possibly was able to interact with them; he found that Tafida was in all likelihood, not in any pain; he ruled that, while Tafida was unlikely to recover significantly, and would develop a range of harmful conditions as a result of her level of dependency, she might be able to breath without ventilation.  While he found it was unsafe to infer that Tafida would wish to live in her current state, he could not reject out of hand her parents submissions about her cultural and religious environment, which might imply such a wish.  Moreover, he considered that some children in the UK in similar conditions to Tafida are already receiving treatment of a similar nature.  Ultimately, Tafida’s highly religious home and cultural environment played a significant role in convincing the judge that the decision whether to treat Tafida was within the scope of parental responsibility, and that the sanctity of life should prevail in this situation.  The judge was also careful to note the very high quality of the institution and the professionalism of the Italian doctors who proposed to take over Tafida’s treatment, which he distinguished from the medical teams who had become involved in the previous high profile cases of Isaiah Haastrup and Alfie Evans.  He further took into account the fact that no purely experimental treatment was to be offered and there was no risk in transporting Tafida, facts that implicitly signalled key differences with the case of Charlie Gard.

“The judgment signalled no departure from previous legal principles on the best interests of the child.  Decisions of this sort are always taken on balance of a broad range of benefits and harms that are specific to the facts of the case.  The single point of departure was the consideration of the application for judicial review.  The review was of the decision not to allow Tafida’s parents to take her to the Italian hospital before a court had ruled on her best interests.  On this the judge ruled that the hospital, by not correctly considering the relevant European law allowing free travel, had acted unlawfully.  This was largely a technical finding.  The judge indicated a correct consideration would have signalled no change in the course of action the hospital had taken, and that a remedy for their illegal behaviour would serve no practical purpose.

“Whether this judgment is to be welcomed is a matter of contention – for Tafida herself, the experts, and ultimately the judge, considered her level of consciousness to be at best very low, and that she was unlikely to feel pain.  Intensive care is exceptionally unpleasant, but it is likely that Tafida is far beyond these concerns.  While some might consider further treatment an indignity, the judge concluded that given the eventual plan to care for by Tafida at home her dignity might be served.  Attention to Tafida’s wishes and feelings was a signal part of Tafida’s defence, but the judge made clear indications that even if her wishes had been evident they would have been only one of many factors balanced in the judgment.  This will be a disappointment to those who feel that, in principle, children’s liberty is disproportionately restricted under current law.

“Simple compassion for parents who desperately want their daughter to live in any and all circumstances means that many will feel this is the right judgment.  At the same time the judgment demonstrates the flexibility of the current “best interests” standard at a time when vocal critics have claimed (incorrectly I believe) it rides roughshod over the rights of parents.  On the other hand, the nuances in the case and the judgment may not be recognised by other parents of children whose circumstances and level of suffering differ from those of Tafida.  My concern is that the message the public receives from the case might make negotiating appropriate levels of treatment much more difficult.  Clinicians privately indicate that, as a result of the high profile and heated nature of the public and media debate around the cases of Charlie Gard and Alfie Evans cases, delivering medical care to children is increasingly arduous and confrontational in a significant minority of cases.  This is clearly a very bad thing.  It is stressful for the clinicians and parents involved and it results in a disproportionate amount of time being taken placating angry and confused parents, rather than caring for their own and other children.  I sincerely hope that that this judgment does not worsen this situation.”

 

Prof Dominic Wilkinson, consultant neonatologist, and Professor of Medical Ethics, University of Oxford, said:

“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 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 then doctors would in some circumstances 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.”

 

Prof Emily Jackson, Professor of Medical Law, London School of Economics, said:

“All decisions involving the medical treatment of children are fact-specific, so the decision in this case applies only to the very particular set of facts here.

“Here, unlike in many previous cases in which doctors and parents have disagreed, the judge ruled that Tafida was not in pain and that life-prolonging treatment was not burdensome for her.  The judge ruled that she would not suffer from being taken to Italy, and that continuing life-prolonging treatment was consistent with a responsible body of medical opinion.

“In these circumstances – where it was ruled that continuing life support might not benefit Tafida, but nor would it likely cause her any suffering – the judge ruled the decision could be taken by her parents, in the light of their religious beliefs about the sanctity of human life.”

 

Prof Julian Savulescu, Uehiro Chair in Practical Ethics, University of Oxford, said:

“It’s the right outcome.  If Tafida is vegetative, continuing treatment won’t cause suffering.  If she is minimally conscious, doctors would have to show she is unrelievably suffering to discontinue treatment in her interests.  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.  This shouldn’t be about religion.  Treatment limitation and futility decisions are best made on grounds of distributive justice, not on grounds of a human being better off dead.”

 

 https://www.judiciary.uk/wp-content/uploads/2019/10/Raqeeb-Judgment-Final-03.10.2019-pdf-Publication-Copy.pdf

 

Declared interests

Dr Giles Birchley: “I have no interests to declare.”

Prof Dominic Wilkinson: “No conflicts of interest.”

Prof Julian Savulescu: “I have a number of grants and have received travel / speaking honoraria.  However, I do not believe that any relate to or are a conflict of interest with this case.”

None others received.

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