Tafida Raqeeb
The Intensive Care Society, as the multi-professional national body for adult critical care, notes the judgement by Justice MacDonald released on Friday 4 October, 2019 in the case of Tafida Raqeeb, a five-year old girl under the care of Barts Health NHS Trust following a catastrophic intracranial haemorrhage. The judgement found in favour of continued mechanical ventilation against the advice of her medical team, pending transfer to Italy for a period of extended assessment.
Our thoughts are with her family and all the healthcare professionals involved in her care, all of whom will have been deeply concerned with determining and providing for her best interests.
The legislative framework for adult patients is different to those for children, and the rights and role of the family in a previously competent patient currently lacking mental capacity, are different from those of the parents of a child. However, some shared principles apply, and in the case of Tafida Raqeeb, there are some points of interest for the adult critical care community.
This was a highly complex and individual case, and the details are important to consider. Broadly, it was an interpretation of existing law in a very specific set of circumstances, and we do not believe that significant new principles have been created.
Firstly, the clinical and ethical decision concerned the question of withdrawing mechanical ventilation in a catastrophically brain-injured but otherwise stable patient, who could arguably survive for years or decades with continuation of that support. It did not touch upon clinical management in an unstable or deteriorating situation, or the escalation and treatment limitation decisions commonly made in acute critical illness.
Secondly, part of the judgement was a judicial review of the Trust’s decision to seek a High Court ruling on best interests under the Children Act before allowing the child’s parents to remove her from their hospital to be taken to another EU State (Italy) to receive treatment. The judicial review concerned, amongst other things, the child’s freedom of movement within the EU under European law and whether such rights were paramount and had primacy over the UK Court’s jurisdiction to consider their best interests first. The judge concluded that it had been unlawful not to consider the child’s EU rights but he accepted it was appropriate to seek a ruling on best interests before she could be transferred to a different hospital. This is a highly technical legal point (and one, moreover, based on the UK’s current membership of the European Union or any future treaties) rather than a change of clinical or ethical principle.
In addition, it took account of the fact that the offer of treatment was a concrete, credible, complete and fully-resourced proposal from an internationally-recognised paediatric referral centre, accompanied by full assessment and a fully worked-up transfer plan thought to be harm-free by at least one of the hospitals involved. This sets a very high bar, and suggests that a different decision would have been reached with a more speculative or less plausible proposal, or one involving quantifiable risk from transfer. A key comfort the judge took in coming to his decision was that he was persuaded that it was improbable that the child would suffer any burden in risk or suffering by the transfer to Italy or continued treatment. It is likely that a different decision would have been reached if this were not the case.
Thirdly, as part of a very finely-balanced set of individual factors, Justice MacDonald took into account the patient's cultural and religious context and close family life, with the evidence and likelihood for transference of those beliefs onto Tafida Raqeeb herself, and as much as her family were able to describe about her partially-formed views prior to her illness. In other words, in considering her best interests with regard to an artificially prolonged life with catastrophic disability, he took all possible steps to consider the patient's likely views and wishes had she been able to form and express them. While medical best interests may be clear, a holistic best interests assessment may take into account wider issues. However, we believe that this judgement was a very specific application of existing principles, and we do not believe it establishes new or wider precedent in the role of culture and religion in clinical decision-making.
In summary, the duty of care for clinicians remains, as before, to make appropriate decisions in the patient's best interest, taking into account all available information. There are well-recognised procedures, different in adults and children, in the event of failing to reach agreement. It remains the case that no clinical team can legally be forced to give treatment which its members believe to be ineffective. The Society’s new Legal and Ethical Advisory Group (LEAG) is in the final stages of recruitment and will be operational by the end of the year. The ICS looks forward to working with its members and its partner organisations in this sphere. A forthcoming workstream will also address the needs and management of children dependent on mechanical ventilation as they transition into adulthood.
Useful links:
The judgement
Expert reaction collated by the Science Media Centre
Joint guidance on Devastating Brain Injury
