This is a guest post from Transparency Project member, Emma Nottingham and Peta Coulson-Smith (Paediatric Registrar, and Clinical Training Fellow & Senior Teaching Fellow in Clinical Ethics and Law at the University of Southampton). Peta tweets as @drpetacs.

This week, Mr Justice MacDonald handed down his judgment in the High Court, holding that continuation of medical treatment was in Tafida Raqeeb’s best interests. The effect of this decision being that she can be treated in Italy, in line with the wishes of her parents. The Transparency Project published a series of blog posts, detailing the arguments by counsel on each day of the hearing earlier this month. See below: 

• day 1
• day 2
• day 3
• day 4
• day 5

As a reminder, here is a brief outline of the case facts and submissions made by counsel. 

On 9th February 2019, Tafida Raqeeb, now aged 5, complained to her mother of a headache. Shortly after, she stopped breathing and needed cardio pulmonary resuscitation (CPR). It was discovered that Tafida had an arteriovenous malformation (AVM) which had ruptured causing bleeding in her brain. The damage to her brain was extensive; she was unable to swallow, communicate or breathe for herself. Following the advice of the treating medical team that continuing treatment was not in Tafida’s best interests, her parents explored treatment options abroad. The Gaslini children’s hospital in Italy agreed to treat Tafida, provided the parents had the necessary funds. 

The case was heard as two concurrent sets of proceedings. The first, an application for judicial review of the decision by Barts Health NHS Trust not to agree to Tafida’s transfer to a hospital in Italy, whilst application for a best interests declaration was pending. Counsel for Tafida and her parents submitted that this decision was amendable to judicial review in circumstances where the Trust is functioning as a public body. It was argued that, as an EU citizen, Tafida should be able to exercise free movement rights according to Article 56 of the Treaty for the Functioning of the European Union (TFEU). Further, it was argued that the choice of medical service provision is a function of parental responsibility, where the child is too young to make a medical decision for herself. It was highlighted that, as per Art 52 TFEU read with Art 24 of the EU Charter of Fundamental Rights, public authorities may not restrict the right to receive services unless there is an imperative public policy reason. It was argued that Tafida’s Art 56 rights were not considered by the Trust and that, even if they had been considered, there would have been no proportionate public policy justification on which they could rely.

Counsel for Barts Health NHS Trust submitted that there is no right or requirement to an antecedent ruling as to the child’s EU Rights prior to a best interest decision being made by the court, where the issue is not where the treatment takes place, but whether the treatment is in the child’s best interests per se. Further, it was submitted that, if Tafida does have a right to an antecedent ruling on her EU rights, the decision by the Trust did not restrict her Art 56 rights. Even if it had restricted her rights, this would have been justified by a legitimate and proportionate objective : the need for the court to determine Tafida’s best interests. Additionally, the restriction would have been in the public interest. In support of this submission, it was contended that Art 24 of the Charter of Fundamental Rights and Art 3 of the United Nations Convention on the Rights of the Child require Tafida’s best interests to be treated as the paramount consideration. 

The second set of proceedings concerned an application by the Trust for a declaration that it would be in Tafida Raqeeb’s best interests for her life-sustaining medical treatment to be withdrawn. On behalf of the Trust, it was submitted that it was not in Tafida’s best interests to continue treatment and that further treatment would be of no benefit given the prognosis of no significant improvement of her condition. In consideration of Tafida’s wishes and feelings, the Trust submitted that, at the age of 4 (the age she was when she went into hospital), she would have no concept of morality or of her current situation and there is no sufficient evidence which can be used to ascertain what her own wishes and feeling might be in this situation. It was also submitted that the religious convictions of the family and Tafida (as far as she was able at the age of 4 years) were only one factor to weigh in the balance of Tafida’s best interests.

Counsel for the parent’s submitted that, in the absence of pain and suffering, any benefit must come from the wider perspective of the family and the religious and cultural context in which they live. It was argued that Tafida understood the concept of religion and had her own religious identity. Thus it was argued that Tafida would want to continue her life even in her current circumstances. This would be an inherent good in the Islamic religion she and her family follow.

Counsel for the independent guardian submitted that it would be in the best interests of Tafida for treatment to be withdrawn. It was argued that the burden of treatment would be significant for her. Further, it was stated, with respect to her wishes and feelings, that she would not have a concept of the situation she is currently in bearing in mind her age and thus she would not be able to form understanding or form a view about end of life or disability.

The Judgment 

In the first paragraph, MacDonald J stated that the decision for the court ‘is a grave, multifaceted and complex one’. In relation to the claim by the parents for judicial review, he declined to grant relief. However, he did state that, in this case, there could be no justification for further interference with Tafida’s EU right to receive services pursuant to Art 56. MacDonald J outlined that ‘when faced with a request by parents of an EU citizen child for transfer for medical treatment in another Member State, in deciding whether or not to agree to that course of action an NHS Trust will need to consider the directly effective EU rights of the child.’ Nevertheless, he emphasised if an NHS Health Trust considers that transferring a child would not be in their best interests, having considered the EU rights of the child, an application to court is required. He stated that, ‘it is highly likely that that decision will constitute a justified derogation from the EU rights engaged on public policy grounds’.

In relation to the best interests decision, MacDonald J concluded that, upon balancing the welfare factors,  ‘I am not satisfied that I can conclude on evidence before the court that life sustaining treatment is no longer in Tafida’s best interests’. He stated that:

In circumstances where T is not in pain, where the burden of the treatment is low, where there is a responsible body of medical opinion that considers that she can and should be maintained on life support with a view to her being cared for at home on ventilation by her family in the same manner in which a number of children in a similar situation to Tafida are treated in this jurisdiction, where there is a funded care plan to this end, where Tafida can be safely transported to Italy, where the continuation of life-sustaining treatment is consistent with  the religious and cultural tenets by which Tafida was being raised and having regard to the sanctity of Tafida’s life, this case does in my judgment lie towards the end of the scale where the court should give weight to the reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of the child’s life will be taken for the child by a  parent in the exercise of their parental responsibility.

Furthermore, he added that rights under Art 2, Art 8 and Art 9 of the European Convention on Human Rights are engaged for both Tafida and her parents. He maintained that Art 9 rights (freedom of thought, conscience and religion) of the parents and of Tafida must be accorded weight in the balancing exercise, where there is a parental belief, which would have influenced Tafida, that it would be a sin to allow treatment to be withdrawn. The family and culture in which Tafida was being raised was deeply imbedded in the Islamic faith. The weight given to sanctity of life, was therefore, given great weight. MacDonald J continued as follows:

Having undertaken that balance, in circumstances where, whilst minimally aware, moribund and totally reliant on others, Tafida is not in pain and medically stable; where the burden of the treatment required to keep her in a minimally conscious state is low; where there is a responsible body of medical opinion that considers that she can and should be maintained on life support with a view to placing her in a position where she can be cared for at home on ventilation by a loving and dedicated family in the same manner in which a number of children in a similar situation to Tafida are treated in this jurisdiction; where there is a fully detailed and funded care plan to this end; where Tafida can be safely transported to Italy with little or no impact on her welfare; where in this context the continuation of life sustaining treatment is consistent with the religious and cultural tenets by which Tafida was being raised; where, in the foregoing context, transfer for treatment to Italy is the choice other parents in the exercise of their parental responsibility and having regard to the sanctity of Tafida’s life being of the highest importance, I am satisfied, on a fine balance, that it is in Tafida’s best interests for life sustaining treatment to continue.

Comment 

The Judicial Review Proceedings

It is unusual that this case was heard as two concurrent cases. Where there is disagreement between parents and the treating medical team as to a child’s best interests, the normal process is to apply to the court, who will then determine the child’s best interests and provide a specific issue order, as per section 8 of the Children Act 1989. The application for judicial review might possibly have been a strategic action to negate the need for independent representation of the child. It is the norm in family court proceedings to ensure that the child is independently represented via CAFCASS. Tafida was represented in the judicial review hearing but her family chose this representation. Further, in the judicial review hearing, there was no obligation on the court to keep the best interests of the child at the heart of the matter. This is because the matter raised through judicial review was the legality of the decision by the Trust not to permit transfer of the child to Italy, in light of the child’s EU right to free movement, rather than whether it was in the best interests of the child to receive treatment at all.

What does this case mean for parents and doctors?

Determining the best interests of a child is the duty of doctors treating children where there is uncertainty or disagreement about treatment or its withdrawal. The General Medical Council (GMC) guidance for doctors state that the components of a best interests assessment include: what is clinically indicated in a particular case, the views of the child, the views of parents, the views of others close to the child, the cultural, religious or other beliefs and values of the child or parents, the views of other professionals and the least restrictive choice on the child’s future options. The GMC guidelines describe how the weight attached to each point will depend on the circumstances and how other relevant information must be considered. When best interests can not be agreed, for example between parents and doctors about withdrawal of life-sustaining treatment, wider discussion between the team and at a clinical ethics committee are important. Ongoing dialogue and a second opinion must be sought. Following this, if agreement cannot be reached, the courts are approached for judgement.

This case has not changed the law. There are marked differences between this case and the high-profile cases involving children from the past few years. Expert opinion is that while Tafida’s medical condition is unlikely to improve, she is stable. Moreover, Tafida has no or minimal awareness and is unable to experience pain, meaning that the burden of treatment is low. This, factored with the importance placed on sanctity of life by the family and community in which she was being raised, tipped the balance towards continuing life-sustaining treatment. That a responsible body of medical treatment are willing to provide ongoing treatment and this will be funded, initially at least, by the parents, added weight to this decision.

This case makes clear that best interests is the standard that doctors and judges must use to determine the appropriate medical course of action for a child. Tafida’s case was by no means clear-cut, and the judgment demonstrates how the unique situation of a child is considered in determining best interests. This is an important point for parents and doctors trying to understand this ruling – these decisions are made on a case by case basis. The particulars and nuances of this decision must not be overlooked; this ruling does not mean that parents or doctors views hold any more weight than previously, or that doctors must provide treatment against their clinical judgement. Doctors do not need to change their practice but continue to consider the unique situation of the child as the GMC guide them to do. They do not need to start placing greater weight on parental views, religion or resources. The best interests test is still a balancing of factors, and some factors are given more weight than others, but this is dependent on the individual case. A judge must make a final decision about best interests if agreement can not be reached locally, and they can determine the appropriate weight to place on factors such as religious beliefs, suffering and resources.

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