Jj (1), Jj (2)

• Jurisdiction: Ireland
• Judge: Ms. Justice Baker,Ms. Justice Dunne,Ms. Justice O'Malley,Mr. Justice O'Donnell
• Judgment Date: 22 January 2021
• Neutral Citation: [2021] IESC 1
• Docket Number: S:AP:IE:2020:000131
• Date: 22 January 2021
• Court: Supreme Court

In the Matter of J.J.

[2021] IESC 1

O'Donnell J.

McKechnie J.

Dunne J.

O'Malley J.

Baker J.

S:AP:IE:2020:000131

S:AP:IE:2020:000132

AN CHÚIRT UACHTARACH

THE SUPREME COURT

Palliative care – Intervention – Article 42A of the Constitution – Parents appealing from High Court orders permitting the treating hospital to move to palliative care should their son’s respiratory functions fail on the application of painkilling medication in the event of a future dystonic crisis – Whether the test for intervention under Article 42A of the Constitution was satisfied

Facts: A young boy, towards the end of June, 2020, suffered catastrophic injuries in an accident which led to his treatment in hospital since the date of his accident. Differences arose between his parents and the medical team charged with his care over the appropriate approach to adopt should his condition worsen, as his medical team believed was inevitable. The High Court (Irvine P) gave judgment granting orders permitting the treating hospital to move to palliative care should his respiratory functions fail on the application of painkilling medication in the event of a future dystonic crisis. The Supreme Court granted leave to appeal direct from the High Court by determinations dated 30th November, 2020, to both the mother and father, and furthermore directed that the guardian ad litem be retained in the proceedings and that the Attorney General and the Irish Human Rights and Equality Commission should be given notice of the proceedings and both parties attended the hearing and made submissions. All aspects of the case – procedural, evidential, and substantive – were challenged. At the heart of the case was a question of the interpretation and application of Article 42A of the Constitution in the light of the evidence, both in respect of the boy’s condition when the application was brought, and as it had subsequently developed.

Held by the Court that it would vary the orders made in the High Court. In particular, in lieu of the wide order in terms of para. 4(i) in the notice of motion, the Court held that it would substitute an order consenting on behalf of the ward to the administration of such medication, sedation or anaesthesia to the ward by subcutaneous, buccal or enteral routes for the primary goal of treating the severe breakthrough of terminal neurological symptoms even though the doses required to alleviate the ward’s suffering may have a secondary or terminating effect on his respiratory function. The Court held that it would not make any order consenting to, or make any declaration in relation to, the treatments covered at paras. 4(ii) to 4(viii) of the notice of motion because there was no evidence and no reason to believe that the parents would not, themselves, consent to such treatments if the situation arose. The Court held that it would also make the declaration sought at para. 4(ix) that the hospital would not be acting unlawfully if the clinical director considered it to be in the best health and welfare interests of the ward, and if it was considered appropriate to do so, to withhold life-prolonging treatments or supports that were not considered to be in the best medical or welfare interests of the ward. The Court considered that it was appropriate to maintain the possibility and primacy of parental decision-making in this case and, accordingly, the consent given and declarations made were subject to the proviso that they would only become effective if, in each instance, the prior consent of the boy’s parents had been sought and refused. The Court held that the consent given and declarations made should also be limited in time and would, accordingly, be subject to review in three months with liberty to apply to the High Court in the meantime in the event of any unforeseen circumstance and the hospital must re-enter the matter before the President for the purpose of such review.

The Court held that it would vary the order made by the High Court. As so varied, the Court held that it would affirm the decision of the High Court and dismiss the appeal.

Appeal dismissed.

Judgment of Mr. Justice O'Donnell, Ms. Justice Dunne, Ms. Justice O'Malley, and Ms. Justice Baker, delivered on the 22 ^nd day of January, 2021.

I – Introduction

A. Background

1 . From time to time, this court has had to consider issues arising in cases which can truly be said to engage matters of life and death. The first such case to come before this court was the case of Re a Ward of Court (withholding medical treatment) (No. 2) [1996] 2 I.R. 79 (“ Re a Ward of Court”), in which the court had to consider the circumstances in which water and food could be withheld from the ward of court, who had been in a persistent vegetative state for many years following a medical mishap during routine medical surgery, with a view to allowing her to die naturally. The issues that arose in that case were described by Hamilton C.J. as “momentous issues of great public concern”. The issues arising in this case are no less momentous. Although the issues raised in these proceedings are difficult, complex, and troubling, it is important not to lose sight of the fact that at the heart of this case is a young boy, who is much loved by his mother and father, by his siblings and his extended family. For them, the circumstances of this case are nothing short of a tragedy, with which they have had to come to terms over the course of the last number of months and will have to deal for the foreseeable future.

2 . The events which have led to these proceedings are, to say the least, very sad. Towards the end of June, 2020, catastrophic injuries were suffered by the young boy in an accident which have led to his treatment in hospital since the date of his accident. Differences have now arisen between his parents and the medical team charged with his care over the appropriate approach to adopt should his condition worsen, as his medical team believe is inevitable. The circumstances are set out in more detail in the High Court judgment of Irvine P. In that judgment, Irvine P. sought to protect the privacy of the boy and his family by giving a general account of the accident and describing the boy as “John” and his treating hospital as “the Hospital”, and we will adopt the same approach.

3 . In the accident, John suffered numerous injuries. He sustained catastrophic brain injuries, together with other significant physical injuries, including a fracture of his left clavicle, multiple rib fractures, a fractured right humeral shaft, pulmonary contusions and pulmonary haemorrhage, a grade 1 splenic laceration, fractured pubic rami, maxillary fractures and a left greater wing of his sphenoid fracture. Following the accident, John was treated initially at a regional hospital close to his home, before being moved the following day to the Hospital, where he has been treated since.

4 . On admission to the Hospital, John required treatment in the Paediatric Intensive Care Unit (“PICU”), where he remained for several weeks. He was required to be on a ventilator until the end of July when he was successfully extubated following a previous unsuccessful attempt to extubate him. As a result of his injuries, John is currently fed by a nasogastric tube, has a long-term catheter to facilitate the delivery of medications, and his lungs need intermittent suctioning to remove secretions. Further, he had a urinary catheter and is doubly incontinent. The medical evidence presented both by John's medical team and by Dr. L., the independent expert instructed by John's guardian ad litem, is not in conflict. Following admission to the Hospital, John had a reduced Glasgow Coma Scale of 4 out of 15 which was described as a persistent finding. It is not expected that John will ever walk, talk, develop any meaningful awareness of his surroundings, be able to communicate or process information, nor will he ever be capable of performing any voluntary movements.

5 . While John suffered a number of significant physical injuries, he also suffered what has been described in medical reports as “devastating brain injuries”. It is not necessary to outline the full extent of these injuries in detail. However, a Consultant Paediatric Neurologist expressed the opinion that the neurological injuries suffered by John are permanent and irreversible. As a result of the neurological injuries suffered by John, he has developed dystonia. The current dispute between the Hospital and John's parents arose because of differences between them as to the treatment of John's dystonia. Dystonia is a hyperkinetic movement disorder which can arise for a number of reasons, including an acquired injury to the brain, in particular, the basal ganglia which are important to movement. This causes abnormal electrical signals to be sent to the muscles. In turn, these signals trigger painful, prolonged, and involuntary contractions of muscles.

6 . The dystonia suffered by John is of a particularly severe nature. In less severe cases, this can be limited to some limbs only, but in John's case it concerns all four limbs. In the High Court, Dr. W., a paediatric intensivist working at another Irish hospital, and who had worked for 9 years at Great Ormond Street Children's Hospital in London, described her experience working with sufferers of dystonia. In her experience – approximately 1,000 different patients – the severity of John's suffering was unparalleled save one patient. Between September 8 ^th and 15 ^th, John suffered in excess of 7 hours of dystonic episodes per day at worst, and just over 2 hours of dystonic episodes a day at best. One particular episode took just under 3 hours to bring under control. His symptoms are brought on by anything which causes him discomfort, including noise and the delivery of medication.

7 . While John's medical team have since succeeded in controlling...