On the one hand, Indi’s doctors believed that the progression of her illness meant that Indi’s life was coming to an end and that treatment was causing her significant distress. On the other hand, Indi’s parents believed that Indi should be given every chance, and they were prepared to move heaven and earth to save her. Like Charlie Gard in 2017 and Alfie Evans in 2018, Indi had been offered treatment at the Vatican hospital, Bambino Gesù. The English courts denied Charlie, Alfie and Indi the chance to travel to Italy and the three children died after their life support was withdrawn. As with Alfie, the Italian government granted Indi Italian citizenship and her treatment in Italy would not have been a cost to the NHS or to the UK taxpayer.
Nevertheless, the court’s final decision held to the judge’s earlier ruling that under the “best interests” test Indi’s treatment should be withdrawn since the treatment she was receiving was causing her pain and distress. The court made its decision in spite of a request by the Italian consul who was Indi’s officially registered Italian guardian, to hand ruling on the case over to him in the first ever recorded use of Article 9 (2) of the 1996 Hague Convention, hence international interest in the case. Article 9 underlines the concern over the subjective nature of the best interests test which is vulnerable to different interpretations. The English courts had jurisdiction because Indi was habitually resident in the UK. The court described the appeals made by Indi’s parents, including recourse to Italian citizenship, as “manipulative litigation tactics” intended to frustrate orders already made after careful consideration.
In the English courts the judge must apply the principle of best interests to his or her deliberations. In previous cases, parents had argued that they should have more of a say on what happens to their children. Following this line of thinking, parents have argued that the best interests test should consider first whether the parents’ proposed course of action causes significant harm. If the action, such as travelling to Italy for treatment, would not cause significant harm, then parental wishes should be given greater weight. However, in all these cases the judges have pointed out that not causing significant harm is inconsistent with a best interests test precisely because it does not give primacy or take account of the child’s best interests. However, the best interests test allows for problematic statements that display negative attitudes towards the worthwhileness of life for patients themselves. Judicial statements declaring that a seriously ill child has an ‘extremely limited quality of life’ and ‘does not experience any meaningful quality of life’ are not helpful for parents who are trying to provide as much good care and as good a life as possible for their child, however short that life might be.
The issue over difficult decision-making for seriously ill infants is not simply a UK issue. At an international conference organised by the Dicastery for Laity and Life in 2019, ‘Yes to life! Caring for the precious gift of life in its frailness’ the participants, including scientists and medical practitioners from the Bambino Gesù hospital, discussed the real difficulties confronting parents when faced with a poor prognosis for their children. They observed that many parents felt left to their own devices and doctors tended to rely too greatly on technical skills and protocols rather than focussing on their small patient. In the experience of doctors, including those at the Bambino Gesù hospital, leaving parents alone to decide the course of action was seen as problematic since parents were often in a state of shock or denial, they did not have expertise, and there might be conflict of interests. A partnership approach of parents and the medical team was recommended as a way forward. The conference participants also explored the best interests principle and noted that the principle was inadequate since it was subject to many different interpretations. A proposal was made to replace the best interests principle with a harm principle: despite its limitations at least a harm principle provided transparency and a clear basis for treatment that could be measured through objective tests such as the pitch of cry, facial expression, hormone and saliva tests, and it could identify some treatment as harmful, painful or too distressing. Putting the patient and pain at the centre would avoid too painful treatment or treatment that simply prolonged a short painful life. The focus for decision-making would thus be on whether a particular treatment was burdensome for this particular patient and not whether life was worthwhile or whether death was in the child’s best interests.
While this challenge to the best interests test gives food for thought, the real difference between care in English hospitals and Vatican based hospitals seems to lie in attitudes. Hospitals like the Bambino Gesù provide not only knowledge, expertise and experience but also hope. Here children are considered treatable, and this differentiates these hospitals from hospitals or hospices that are directed by terminal illness. With a focus on the small patient, parents are counselled and accompanied with clear information. Appropriate pain relief and palliative care suited to small lives are paramount. Moreover, family support through networks with parents who had been in similar situations and who could testify to the option for life help to address the sense of loneliness felt by many parents.
Professionals at the Bambino Gesù have observed that with good support parents are better prepared psychologically for difficult outcomes. Parents like those of Indi, Charlie and Alfie feel abandoned by the medical and legal professions: they fear that doctors have given up on their children and this fear creates mistrust. Parents need hope and to be surrounded by a medical team that shows it cherishes the life of their beloved child. Given that more and more infants are surviving at twenty-two weeks gestation and that medical advances are offering more advanced treatments for seriously ill infants, an attitude of hope should shape the character of perinatal medicine.
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This article is reproduced with kind permission of The Tablet
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Photo by Anna Shvets
