In a heart-rending case concerning the right to life and right to choice of venue with regard to palliative care, the parents of an almost two-year old boy become torn between the stark truth of their son’s condition, and the parental struggle to override the needs of the State, where the only voice missing is that of the child.
Born in spring of 2016, the respondents’ son Alfie James Evans was admitted to the Alder Hey Hospital in December of that year, after their son displayed a number of concerning behaviours that in turn led to various forms of treatment, albeit none of which showed any long-term success, until he was later diagnosed with a mitochondrial disorder, producing a degenerative condition that itself was causing the functional erosion of his brain to the point of almost exhaustion, while also proving elusive as to the exact cause and identifiable epistemology.
As time progressed, their son eventually lapsed into a coma, and thus the decision was broached as to what possible steps were available to both the respondents and the hospital, regards how best to care for their son during the time remaining between the diagnosis, gradual and distressing deterioration, and his eventual passing.
The hospital had initially suggested that a long-term palliative plan might offer a prolonged lifespan, although the ultimate prognosis was that Alfie was now in a semi-vegetative state, and would remain so indefinitely, however the respondents were reluctant to accept the suggested prognosis, and so in December 2017 the applicant NHS Trust sought a judicial declaration in the High Court, to support their conclusion that there was little merit in continuing to keep Alfie under ventilatory support, whereupon the respondents moved to adjourn the hearing.
Having undertaken extensive research around the diagnosis, the respondents argued that previous symptoms were traceable to hydrocephalus, however the brain tissue had continued to degenerate, and whatever now remained was merely water and cerebral spinal fluid, as anticipated by the medical team and relevant expert testimonies. In addition to this, the respondents had advised that Alfie be transferred to the Bambino Gesu hospital in Rome, Italy, where should no treatment prove conclusive, he would again be admitted to a third hospital in Much, Germany, albeit at significant risk to his already fragile health.
While the court extended tremendous sympathy to the plight faced by the respondents, it relied in this instance upon the expert opinion of a Professor Nikolaus Haas of the University Hospital, Ludwig-Maximilians university, Munich, who had previously remarked that:
“Based on the extensive testing already performed, I do agree with the medical teams involved that there are no useful tests that may be performed to improve Alfie’s condition. The genetic testing (i.e. whole genome sequencing) is performed by blood sampling and without any risks for Alfie. These tests may in certain cases be beneficial to delineate a new rare disease as pointed out by the doctors of the Bambino Gesu Hospital. To the best of my knowledge these tests have, even if a new disease is found, never been able to cure a patient with a similar disease pattern as Alfie shows.”
While in Aintree University Hospital NHS Trust v James, Baroness Hale had explained that:
“[T]he focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.”
And so with full cognisance that Alfie had now lost all sense of vision, hearing, smell and touch response, the court was appointed the painful task of holding that the continued use of ventilation was now an exercise in futility, and that in the best interests of the child, the applicants were free to determine an end date for the treatment.
Relentlessly pursued in the Court of Appeal, Supreme Court and European Court of Human Rights, the previous judgment was consistently upheld, before being heard again in the High Court in order for a decision to be made as to exactly when the palliative care was to cease; however under new representation, the respondents sought a writ of habeas corpus on grounds that Alfie was now being unlawfully detained in Alder Hay hospital against the wishes of the respondents, a contention that was given little credence, and upon which the court relied upon the words of Lady Hale in the Supreme Court hearing, who stressed that:
“A child, unlike most adults, lacks the capacity to make decisions about future arrangements for themselves. Where there is a dispute, it is for the court to make a decision, as it would in respect of an adult without capacity. This is the gold standard by which most of these decisions are reached. It is an assessment of best interests that has been concluded to be perfectly clear.”
Which again concluded that the care plan now in effect was in every respect, in the best interests of their son, and that it was the express desire of the court that the respondents at least help support the medical team assigned his care.
Appealing against the decision under Rule 52.3(1)(a)(iii) of the Civil Procedure Rules, the respondents argued before the Court of Appeal that the High Court had merely continued in its support of the cessation of medical ventilation, instead of clarifying as to the lawfulness of Alfie’s alleged detention at Alder Hay hospital, upon which the Court turned to Gard v United Kingdom, wherin McFarlane J had held that:
“It goes without saying that in many cases, all other things being equal, the views of the parents will be respected and are likely to be determinative. Very many cases involving children with these tragic conditions never come to court because a way forward is agreed as a result of mutual respect between the family members and the hospital, but it is well recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to “try anything”, even if, when viewed objectively, their preferred option is not in a child’s best interests. As the authorities to which I have already made reference underline again and again, the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view.”
Thus the Court held again that:
“The application of a different legal label, namely habeas corpus, does not change the fact that the court has already determined the issues which the parents now seek, again, to advance. Their views, their rights do not take precedence and do not give them an “unfettered right” to make choices and exercise rights on behalf of Alfie.”
Before dismissing the appeal on grounds similar to those taken by the High Court; after which an application for the return of Alfie to Italy was presented to the High Court, based upon the granting of Italian citizenship by the Italian Ministry of Foreign Affairs to the Secretary of State for Foreign and Commonwealth Affairs, an act that was immediately refuted both on grounds of lineage and self-evident jurisdiction of the court, the latter of which was shown in Re B (A Child) (Habitual Residence: Inherent Jurisdiction) in which Lord Wilson had explained how:
“A child’s habitual residence in a state is the internationally recognised threshold to the vesting in the courts of that state of jurisdiction to determine issues in relation to him (or her).”
“Article 8 of Council Regulation (EC) No 2201/2003 (“Regulation B2R”) provides that the courts of an EU State shall have jurisdiction in matters of parental responsibility over a child habitually resident there at the time when the court is seised.”
However the Court also noted that since the last hearing, Alfie had been successfully extubated from the ventilation unit, and was now breathing of his own accord, a change that moved the court to conclude that:
“[T]here arises an opportunity to explore creatively, ambitiously and even though it may be a forlorn hope, cooperatively, the options that may now emerge in a palliative care plan which could encompass, at least theoretically, Alfie being cared for, in his final hours or days, at home or in a hospice, or even on the ward and not in the PICU.”
Upon which the application was dismissed, and the matter now left for the respondents and Alder Hay Hospital to hopefully negotiate as best as possible with the time remaining.