Abstract
The Tafida Raqeeb case comprised both a judicial review and a determination of Tafida’s best interests. The judicial review concerned Barts Health NHS Trust’s (Barts) decision not to permit Tafida’s parents to transfer her to Gaslini Children’s Hospital (GCH) in Genoa, Italy. Barts requested that a judge declare that the proposed transfer was not in Tafida’s best interests. In the High Court, MacDonald J’s ruling on the judicial review element of the case was that Barts had not acted unlawfully. In the best interests determination, MacDonald J deemed that continued treatment was in Tafida’s best interests, hence Tafida’s parents would be permitted to transfer her to GCH. Although medical views of best interests tend to prevail in these types of cases, the Raqeeb case, like other previous cases where judges have found in favour of parents, demonstrates that the best interests test is not designed to override the wishes of parents, as its detractors allege, but is flexible enough to allow judges to weigh competing factors in making a determination. In the Raqeeb case, in the absence of clear evidence regarding pain and suffering, subjective factors were accorded more weight within the balancing exercise. I argue that the best interests test should be retained and that a reform affording parents a ‘right to try’ should not be adopted, as this may prolong the pain and suffering of some infants. Nonetheless, the Raqeeb case demonstrates the lack of dialogue between parents and clinicians, in some cases. It therefore bolsters the argument that mediation should be offered in these types of cases.
Introduction
The recent case concerning the treatment of the young girl, Tafida Raqeeb, heard in the High Court of England and Wales, comprised both a judicial review application and a determination of Tafida’s best interests. The judicial review concerned Barts Health NHS Trust’s (Barts) decision not to permit Tafida’s parents to transfer her to Gaslini Children’s Hospital (GCH) in Genoa, Italy. Barts requested a court declaration that the proposed transfer was not in Tafida’s best interests. 1 The best interests principle is a core principle of medical ethics contained within guidelines in numerous countries 2 and is determinative where there are disputes between parents and clinicians concerning the appropriate treatment of a young infant within the jurisdiction of England and Wales. 3 In the High Court, MacDonald J’s ruling on the judicial review element of the case was that Barts had not acted unlawfully. In the best interests determination, MacDonald J deemed that continued treatment was in Tafida’s best interests, hence Tafida’s parents would be permitted to transfer her to GCH. Although medical views of best interests tend to prevail in these types of cases, 4 the Raqeeb case, like other previous cases where judges have found in favour of parents, 5 demonstrates that the best interests test is not designed to override the wishes of parents, as its detractors allege, 6 but is characterised by flexibility which allows judges to weigh competing factors in making a determination.
In the absence of clear objective medical evidence regarding pain and suffering in the Raqeeb case, subjective factors were accorded more weight in the balancing exercise. However, Tafida’s mother, Shelina Begum, remains convinced that ‘the law now needs to be revisited’. 7 She wants a ‘clear law that says if there is a reputable hospital prepared to treat a child then there should be no blocking’. 8 On the contrary, I argue that the best interests test should be retained and that such a ‘right to try’ should not be adopted, as this may prolong the pain and suffering of some infants. Nonetheless, the Raqeeb case, like previous high-profile cases in England and Wales involving disputes between parents and clinicians (such as the cases involving the infants Ashya King, 9 Charlie Gard 10 and Alfie Evans 11 ), demonstrates the need for legal reform to ensure that mediation is offered where such disputes arise. 12 The threat of litigation, in such cases, may fuel conflict and entrench the polarised positions of clinicians and parents. 13 In addition, protracted disputes are stressful for both parents and clinicians. 14 Mediation (which is also sometimes referred to as conciliation) ‘is a private, voluntary, informal process in which an impartial third person facilitates a negotiation between people in conflict and helps them find solutions that meet their interests and needs’. 15 It is used in other jurisdictions, such as the United States (US), where it often prevents disagreements crystallising into conflicts. 16 Mediation also plays a significant role in Australia, New Zealand, Canada and parts of mainland Europe. 17 Mediation is consensual, flexible, relatively quick and relatively cheap. 18 Reform requiring that mediation be offered in these types of cases, within England and Wales, may facilitate understanding between parents and clinicians and potentially result in mutual agreement that could prevent expensive, time-consuming and stressful litigation.
Facts
Tafida Raqeeb was born on the 10th of June 2014 to Shelina Begum and Mohammed Abdul Raqeeb (who are citizens of both the United Kingdom and the People’s Republic of Bangladesh) in Newham, East London. In his judgment, MacDonald J described Tafida’s parents as ‘committed Muslims’. 19 In February 2019, Tafida complained of a headache and thereafter stopped breathing. Tafida was escorted by ambulance to Newham University Hospital, where an examination revealed a large blood clot on her brain. 20 The blood clot, caused by arteriovenous malformation, was deemed to be life threatening and to require immediate surgical intervention. 21 After surgery, on the 9th of February, Tafida was treated in the paediatric intensive care unit of Kings College Hospital. She was subsequently transferred to the Royal London Hospital, which is part of Barts, on the 3rd of April 2019. 22 Since her surgery, Tafida has been kept alive by artificial ventilation. 23 In March 2019, her clinicians recommended palliative care. 24 In the view of Dr Martin Smith (a consultant in paediatric neurology at the Oxford John Radcliffe Hospital, who was asked by Barts to examine Tafida), any chance of Tafida ‘regaining any level of awareness or increased awareness is negligible’. 25
Similarly to the parents in the King, Gard and Evans cases, Tafida’s parents contacted hospitals worldwide seeking help for their daughter. 26 One of the hospitals they contacted was GCH. The doctors at GCH averred that Tafida could be weaned off a ventilator following a tracheostomy (a medical procedure whereby an opening is created in a patient’s neck so that a tube can be inserted) and determined that this option required further investigation. 27 In their view, following a successful tracheostomy, Tafida could be managed at home by well-trained caregivers. 28 According to Shelina, Kings College Hospital had stated that Tafida would be given a tracheostomy, but this did not occur following her transfer to the Royal London Hospital. 29 In July, Tafida’s parents asked for her to be transferred to GCH. 30 They also set up an online campaign in order to fund treatment for their daughter in Italy. 31 The doctors at Barts did not acquiesce to the transfer, as they deemed that it would not be in her best interests. Tafida’s parents submitted an application for a judicial review of the decision of Barts not to permit the transfer of their daughter to the Italian hospital, to the High Court. Concurrently, Barts submitted an application to the High Court seeking a declaration that such a transfer would not be in Tafida’s best interests. The hearing took place at the High Court in September and the judgment was published in October.
Judicial review
At the High Court, the legal team of Tafida’s parents argued that the corollary of the right to provide services (including intensive care and palliative care) within European Union (EU) law 32 is the right to receive them. 33 They contended that such rights cannot be restricted, unless there is an imperative public policy reason. 34 As the trust failed to consider Tafida’s right to receive services, in making the decision not to permit her transfer to Italy, the legal team of Tafida’s parents argued that it was unlawful on public law principles. 35 In addition, they contended that the trust had acted unlawfully, for the purposes of the Equality Act 2010, 36 that the trust had deprived Tafida of her liberty, 37 and that the trust had failed to engage with the rights contained within the NHS Constitution. 38 MacDonald J determined that the decision of Barts was amenable to judicial review as it is a public body exercising statutory functions under the NHS Act 2006. 39 In addition, the NHS Constitution states that patients have the right to a judicial review if they ‘have been directly affected by an unlawful act or decision of an NHS body or local authority’. 40 MacDonald J rejected the argument that Barts’ decision deprived Tafida of her liberty. 41 Counsel for the parents of Charlie Gard and Alfie Evans had made similar arguments in those cases, which had been rejected by the European Court of Human Rights and the UK Supreme Court, respectively. 42 MacDonald J also rejected the arguments that Barts’ decision discriminated against Tafida for the purposes of the Equality Act 2010 and that the trust had failed to consider the NHS Constitution. 43
Nevertheless, MacDonald J determined that the trust’s decision was prima facie unlawful, and not compliant with the usual standards of administrative law, as the trust had failed to direct itself to applicable EU law. 44 MacDonald J deemed the trust’s decision to be a plain interference with directly effective EU rights. 45 Nonetheless, he resolved that if the trust had considered Tafida’s EU rights, it would have deemed that interference with such rights was justified on public policy grounds. 46 The trust had argued that they were unable to acquiesce to the wishes of Tafida’s parents in circumstances where they had made an application to the High Court in order to determine her best interests. MacDonald J determined that the best interests determination procedure does not conflict with the primacy of EU law, is not discriminatory on the grounds of nationality or otherwise 47 and is proportionate to its objective. 48 MacDonald J also stated that it would have been contrary to Tafida’s best interests for her to be transferred to GCH where there was an extant dispute regarding her best interests. 49 Therefore, MacDonald J did not grant relief in respect of the judicial review. If the United Kingdom leaves the EU, the rights which were claimed on behalf of Tafida in this case will not be applicable in future cases where parents want to transfer a sick child to a hospital situated within a member state of the EU. Nonetheless, parents will still be able to argue that transfer to a foreign hospital (including hospitals outside of the EU, as in the Gard case) may be in their children’s best interests.
Best interests
MacDonald J was not persuaded by the contention of the parents’ legal team that where the parents of a sick child and a body of reputable medical opinion are in agreement, as to the treatment of that child, ‘this negates the need for the court to be involved at all’. 50 In the best interests determination, MacDonald J averred that ‘substantial factors tend to support the case made by the trust’. 51 However, he also thought that there were compelling factors on the opposite side of the balance. 52 Ultimately, he determined that ‘the latter prevail over the former’ 53 and dismissed the applications made by Barts. 54 In MacDonald J’s view, where there is an absence of clear facts regarding pain or awareness of suffering (as there was in this case), ‘the answer to the objective best interests tests must be looked for in subjective or highly value-laden ethical, moral or religious factors extrinsic to the child’. 55 Such factors include futility, ‘dignity, the meaning of life and the principle of the sanctity of life’. 56 MacDonald J acknowledged that such factors may ‘mean different things to different people in a diverse, multicultural, multifaith society’. 57
In reaching his decision, MacDonald J considered different aspects of the case relevant to the best interests test, including the medical evidence and the religious convictions of Tafida’s parents, which they had begun to instil into their daughter. In MacDonald J’s view, making the orders requested by Barts would not be a necessary or proportionate justification for interference with Tafida’s parent’s rights to a private and family life. 58 MacDonald J was explicit that a number of factors tipped the balance in favour of Tafida’s parents. Similarly to the Gard and Evans cases, the question as to whether Tafida could feel pain was an important consideration at the hearing. 59 In an interview, on Good Morning Britain (GMB), Shelina stated that Tafida was not in pain and expressed the view that she would have agreed with her doctors concerning her treatment if she was. 60 Tafida’s parents contended that Tafida was improving on a daily basis. In this respect, they contended that she has a sleep/wake cycle, can control her urinary functions for a period of time, can move in response to her parents, moves her body in response to physiotherapy, reacts to painful stimuli and reacts to her mother’s voice. 61 MacDonald J stated that the possibility of pain could not be excluded. 62 Nonetheless, he concluded that Tafida was ‘not in pain and [was] medically stable’. 63 Significantly, while in the Gard and Evans cases, the proposed transfer of children to hospitals in the US and Italy, respectively, portended a possible worsening of the condition of the respective infants in those disputes, 64 in Tafida’s case, Barts conceded that transferring her to the GCH could occur with minimal risk. 65 In MacDonald J’s view, Tafida could be safely transported to Italy ‘with little or no impact on her welfare’. 66
MacDonald J stated that he was satisfied that Tafida’s current medical condition is substantially irreversible and that she will remain profoundly neurologically disabled for the rest of her life. 67 Nonetheless, he noted that whether Tafida can be weaned off a mechanical ventilator is a question which the Italian medical team believe requires further evaluation. 68 MacDonald J determined that the burden of the treatment to keep Tafida in a minimally conscious state is low and that it was relevant that a responsible body of medical opinion considered that Tafida could be maintained on life support (with the aim of ultimately enabling her to be cared for at home on ventilation by her family, as children in similar situations are cared for). 69
MacDonald J averred that the right to freedom of thought, conscience and religion 70 must be accorded weight in the balancing exercise. 71 Nonetheless, he was clear that although religious convictions were an aspect to be considered in the best interests determination, they did not confer on parents the right to access treatment which was not in a child’s best interests. 72 MacDonald J dismissed the argument (based on an equivalence between the Children Act 1989 and the Mental Capacity Act 2005) that the religious convictions of Tafida, and her relatives, should be particularly pre-eminent in the best interests analysis. 73 MacDonald J stated that ‘the wishes and feelings of the child do not carry any presumption of precedence over any of the other factors in the welfare checklist’. 74 MacDonald J determined that in cases under the Children Act 1989, particularly those concerning younger children and infants, it is not useful to seek to import principles wholesale from the Mental Capacity Act 2005. 75 Such an importation posed the risk of imputing to a child matters beyond their comprehension. 76 The evidence indicated that Tafida had a growing understanding of the religion of Islam, but in Macdonald J’s view, she would have had ‘no concept or contemplation of her current situation, or of the complex and grave legal, moral and ethical issues it raises’. 77 However, he mused that, if asked, Tafida would not reject her current situation ‘out of hand’. 78 MacDonald J concluded that the continuation of life-sustaining treatment was consistent with ‘the religious and cultural tenets by which Tafida was being raised’. 79
The difference between the Raqeeb case and its immediate predecessors (the Gard and Evans cases) is therefore that where there is a lack of clear evidence as to whether a child is in pain or aware of suffering and there are clinicians who are of the opinion that they could be cared for at home (in the same manner as children in similar situations), subjective factors (such as religious belief) may be more influential in a determination regarding an infant’s best interests. In the Gard and Evans cases, the religious beliefs of the parents were also a prominent factor behind the litigation. However, in those cases, subjective factors were less influential where there were concerns about the continued pain and suffering of the infants involved, which could be exacerbated by travel, and these were not applicable in the Raqeeb case. The day following the High Court’s judgment, Alistair Chesser (Barts Chief Medical Officer) confirmed that the trust would not be appealing against the ruling. 80 Tafida was subsequently taken to Italy on the 16th of October 2019. 81
Reform
Although Tafida’s parents were successful, they have indicated that they support reforming the current law. For example, Shelina stated, in an interview on This Morning, that ‘parents should have the right to decide for the best interests of their child’.
82
While the Gard and Evans cases led for a clamour among some to replace the best interests test, one positive aspect of the judgment in Tafida’s case is that it reminds us that medical opinion does not always prevail and that the test is sufficiently malleable to enable decision makers to take account of the particularities of the cases brought before them.
83
Nonetheless, Shelina’s other comments in television interviews evidence the problematic lack of dialogue between parents and clinicians in some cases. For example, in one interview, Shelina stated that ‘I don’t know why they [Barts] don’t agree. They have never made anything clear to me’.
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In another interview, Shelina stated that: I have written to all the directors, all the trustees. No one has come to speak to us. Instead they’ve rushed in and submitted this court case to actually terminate Tafida’s life.
85
In response to the Charlie Gard case, Baroness Jolly stated that she would propose an amendment to the Access to Palliative Care Bill (APCB),
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at the committee stage in the House of Lords. Baroness Jolly stated that her proposed amendment would do the following: First, it would require the Secretary of State to put in place measures to improve access to mediation where conflict was in prospect. Secondly, it would provide for ethics advice and the means necessary to obtain second opinions swiftly. Thirdly, it would prevent court orders being made to prevent parents seeking treatment where that treatment was not harmful and where another reputable hospital was willing to provide it. In essence, this final provision is about the right to try.
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Conclusion
The Raqeeb case demonstrates the flexibility of the best interests test, which is determinative where there are disputes between clinicians and parents regarding the medical treatment of young infants. It shows that the best interests test is not designed to override the wishes of parents, as its detractors allege. Rather it allows judges the flexibility to take into account the particularities of the cases that they are adjudicating upon. As the evidence regarding pain or suffering was unclear in the Raqeeb case, unlike in the earlier Gard and Evans cases, other factors were accorded more weight within the best interests determination. Nonetheless, the Raqeeb case is similar to previous cases in revealing a lack of dialogue between parents and clinicians. It therefore bolsters the case for legal reform to ensure that mediation is offered in these types of cases in the future to facilitate communication between parents and clinicians. Mediation may facilitate mutual understanding between clinicians and parents and therefore prevent the need for recourse to costly, time-consuming and stressful litigation.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
