By Ilaria Bertini.
In recent months the story of Indi Gregory has been brought to light by the media as another dreadful story of life and death involving a critically ill 8-month-old baby with no prospect of recovery.
When Indi was born, she was admitted as a PICU patient at Queen’s Medical Centre in Nottingham (UK) because of three conditions: a rare neurometabolic disorder (D, L 2-hydroxyglutaric aciduria) which is badly affecting her brain, severe bilateral progressive ventriculomegaly which leads to enlarged brain ventricles from a build-up of spinal fluid, and tetralogy of Fallot, which affects normal blood flow through the heart. “Following a serious desaturation episode on 6 September 2023, Indi was fully intubated and has been intensely ventilated ever since”. According to the medical evidence, Indi “showed little awareness of the world around her” and she “experienced frequent pain, multiple times a day, as a result of the various medical interventions, and displayed reaction to painful stimuli with crying, increased heart rate, wincing and gasping.”
In her last weeks, Indi’s condition dramatically deteriorated (to the point of needing continuous sedation) such that the medical team in charge of her care suggested stopping invasive treatments, including weaning her off artificial respiration, and moving her to palliative care. Unfortunately, the relationship of trust between Indi’s parents and her medical team broke down and the parties were unable to agree on Indi’s ongoing care plan. For this reason, the case was brought multiple times before the UK courts. Eventually, Indi was extubated and passed away in a hospice with her family by her side.
Initially, on 13th October Mr Justice Peel, called to decide on Indi’s fate, agreed with the hospital and second medical opinion that “further forms of aggressive and invasive treatment are not in Indi’s best interests, whilst recognising that this would likely result in the shortening of her life.”
Because of new expert evidence, a further court hearing followed by a new judgement took place early in November. In particular, the parents argued that Indi could be transferred to Bambino Gesú Hospital in Rome, which was willing to fund and manage a critical treatment plan comprising a cardiac intervention, the continuation of experimental therapies for Indi’s condition, life sustaining treatments and palliative care.
However, according to the evidence before the Court “there is nothing to suggest that IG [Indi Gregory]’s prognosis would be beneficially altered by the Italian hospital’s treatment. On the contrary, it may well prolong pain and suffering if and to the extent that it incorporates invasive procedures which in my judgement are not in IG’s best interests, and should not be sanctioned.” Moreover, Mr Justice Peel highlighted the possible risks connected to the air ambulance transfer to Rome in terms of the patient’s distress and suffering. For these reasons, the Court in line with Queen’s Medical Hospital ordered the withdrawal of life-sustaining treatments and the introduction of palliative care only.
In the meantime, the Italian Government, in the hope of changing the situation and allowing Indi’s transfer to Bambino Gesú Hospital, conferred Italian citizenship on her. This act may have had only an emotional effect. In fact, in his latest judgment delivered on 8th November Mr Justice Peel focused on the location of Indi’s invasive treatment withdrawal, i.e., either hospital or hospice (not at home as her parents wished); stressing, however, that she might be able to return home with a care plan once her condition was stable. Moreover, since Indi had been under continuous sedation for a long period, the awakening process should take place in a secure environment where adverse symptoms could be promptly tackled. Finally, the court highlighted that Indi’s new Italian citizenship did not affect its conclusion. The Court of Appeal in its final hearing, not yet published, confirmed the last High Court decision tout court.
Sadly, in the past decade, there have been a few cases along the lines of Indi’s which may be symptomatic of a need for change, which also prompted a review by the Nuffield Council on Bioethics laid before Parliament a few months ago.
Among the concepts that always resonate in these circumstances are those of “best interests of the child” and “parental responsibility.” When it comes to medical decisions, these should harmonise, but occasionally they conflict because their interpretation can lead to tension between the parents and the medical team and, ultimately, an impasse. Hence seeking a Court order may be the only way forward.
As Mr Justice Peel underlines in Indi’s case, within UK legislation and case law concerning the concept of parental responsibility (see Children Act 1989) parents have a duty of care towards their children and they need to consent to their medical treatments. However parental responsibility may be overridden by a court order when a parental decision regarding their child’s medical plan is considered against the child’s best interests.
Furthermore Mr Justice Peel emphasised many times that Indi experiences pain and distress related to her more invasive treatments which are not conferring sufficient benefit and that a possible transfer to another hospital, namely Bambino Gesú in Rome, “is intrinsically bound up in the issue of treatment and best interests” while “the court’s powers must be exercised with the utmost care, informed by a holistic view of evidence, and an evaluation of the child’s best interests.” According to the compassionate care plan proposed by the hospital (and dated 9 October 2023), Indi should be extubated and non-invasive ventilation should be provided for at least the following 7 days and then if appropriate could continue longer.
A holistic view of the evidence, regardless of any conferral of citizenship, needs to strike the right balance between suspending disproportionate therapies – since not appropriate given the patient’s medical picture – and allowing palliative care, not excluding basic measures such as nutrition and hydration and non-invasive ventilation as needed and pain management to accompany the patient up until the end. Last but not least, as the NCOB recommends in its independent review on this matter, “[h]ealthcare professionals in clinical leadership roles should take responsibility for modelling a team culture which recognises and prioritises relationship-building with children and parents as an integral part of providing good holistic care to a child.”
Author: Ilaria Bertini
Affiliations: Bios Centre
Competing interests: None declared