As mentioned in my first blog post this week, there are two cases being heard. The first three days heard the first case, which was an application for judicial review. This application was made by Tafida’s parents to consider the legality of the decision of the hospital trust not to permit Tafida to be moved to the Gaslini hospital in Italy. The case considered whether, as a matter of EU law, Tafida should have been transferred to Italy under her EU rights to freedom of movement and freedom of services, in light of the fact that the purpose of this trip was to receive treatment which the treatment medical team have considered not to be in her best interests.
Thursday saw the commencement of the second case, which was an application from the treating hospital for permission to lawfully withdraw treatment, as the continuation of treatment would provide no further benefit and was not in her best interests.
Tafida’s mother provided a witness statement and underwent cross-examination from the legal representation of each party to the case, including Cafcass, whose purpose is to act as an independent representative of the child. Tafida’s mother told the court of Tafida’s commitment to her religion through her behaviour, explaining how she would pray, participate in fasting and had requested to wear a headscarf. All of this had been voluntary. Although Tafida’s mother stated that Tafida was too young to understand end of life, she argued that she understood that premature death was wrong as she had been concerned when a ladybird was thrown out the window and also when her goldfish died as a result of her bother overfeeding it.
Tafida’s mother explained that she had sought advice from the Islamic Council of Europe who informed her that Muslims are in a state of perpetual gain, even when there is no pleasure and that it is a great sin in Islamic law to end a life prematurely, which can only be dictated by a higher power. Speaking on behalf of her daughter, she stated that Tafida would want to have continued treatment to preserve her life in whatever form. She then proceeded to show the courtroom videos of Tafida in hospital where she is making little hand movements. She also explained the large amount of family support that would be in place for Tafida’s care. Tafida’s mother continued by stating that she no longer wanted any doctors in the UK treating Tafida because there was no longer any trust. She explained that she would like to take Tafida to Italy for a tracheostomy and to receive the training needed to learn to care for her. They would then return to the UK.
In her submissions, Katie Gollop QC, representing the Health Trust stated that, ‘The court has seen two different Tadifas. In the videos that we have been shown we have seen Tafida as bubbly, bright, clever, bilingual, appropriately assertive, warm hearted and an essential part of her family, without whom they cannot be complete. Gollop went on to explain that the hospital never got to meet that Taftida. They have met a little girl who, at present, has minimal brain function and is beyond experience. A medical expert described in medical notes that Tafida is as close to a vegetative state as is possible, and that she might develop a range of complications in the future. She clarified that the position of the treating medical team is not that they believe that Tafida’s life is pointless or futile but that the continuation of treatment would be of no positive benefit. Gollop explained that further treatment comes with no positive experience because Tafida is beyond experience. In response to the advice given to Tafida’s mother by a religious official, Gollop questioned how Tafida can be in a state of perpetual gain, if she has no experience.
Gollop highlighted that the question comes down to: how do we treat those who have no awareness? What are the rights of those who suffer no pain and no experience? To what extent should the religious views of the family outweigh the child’s right? She reminded the court that children are not things and they are not chattels of their parents. If children continue to have rights while in this condition, then they have a right to not suffer inhumane and degrading treatment as per Article 3 of the European Convention on Human Rights. She emphasised that, in spite of the treating medical team maintaining that Tafida was not in any pain, Tafida’s right to bodily integrity would be infringed by the continuation of treatment. She added that if the case concerned a Gillick-competent child, for example a 14-year-old, then the position might be different. On the question of best interests, Gollop advised the judge, Mr Justice MacDonald, ‘you have to stand in her shoes and make the decision for her’.
David Lock QC, acting for the parents, stated that the family sat on the ‘upper end of the spectrum’ in terms of commitment to their religion and thus argued that they deserve to be heard seriously because their religion, its values and its culture is how the family see the world. He argued that we can be confident that Tafida would want to do that which her religion says was right. Prior to being in hospital, Tafida was developing own personality and values moulded by her cultural identity. Lock submitted that we must give effect to her rights to religion under Article 9 of the European Convention on Human Rights, given that religion is of considerable importance here.
Further, he stated that the evidence of the family is not to be discounted merely because they are family. Equally, they are not to be condemned for having hope. All loving parents have hope, it would be inhuman not to have hope. And sometimes, just sometimes, against the odds, an element of the hope is realised. Nobody knows how complex issues will work in the future so doctors are right to offer their expertise but parents are entitled to hope.
Lock asserted that we do not make choices by devaluing the life of disabled people and submitted that there was never a time when parents unequivocally agreed to a withdrawal of treatment. He argued that whether a life of minimal awareness has benefit is a value judgment. He suggested that delivering awareness of spiritual life is vitally important in the values system in which Tafida grew up in and in her community. Lock submitted that the argument should not be met from a secular perspective because she is not a secular child.
The submissions of Mr Sachdeva QC, who has been instructed by Tafida’s aunt as litigation friend, and the submissions of the Cafcass representative will be heard Friday.