Supreme Court of Ireland: While deliberating on a somber appeal of “life or death”, filed by the parents of a boy (hereinafter referred to as ‘John’ in order to protect the child’s privacy) with permanent brain injuries, intended at ensuring that they, rather than his treating hospital, have control over his medical treatment, the bench of Mr Justice O’Donnell, Ms Justice Dunne, Ms Justice O’Malley, and Ms. Justice Baker, held that the hospital would not be acting unlawfully if the clinical director considered it to be in the best health and welfare interests of John, (and if it was considered appropriate to do so) to withhold life-prolonging treatments/ supports that are not considered to be in the best medical or welfare interests of John. However, in order to maintain the possibility and primacy of parental decision-making, in this case, the hospital must act thus only in the instance the prior consent of John’s parents had been sought and refused.
John suffered catastrophic injuries towards the end of June, 2020, in an accident which led to his treatment in ‘the hospital’ since the date of his accident. As per the doctors, John was required to be on a ventilator until the end of July when he was successfully extubated following a previous unsuccessful attempt. 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. He had a urinary catheter and is doubly incontinent. As per the diagnosis, it is highly unlikely that John will ever walk, talk, develops any meaningful awareness of his surroundings, be able to communicate or process information; nor will he ever be capable of performing any voluntary movements.
In addition to the unfortunate condition, John has developed a severe form of ‘dystonia’ which is a hyperkinetic movement disorder that can arise for a number of reasons, including an acquired injury to the brain, in particular. This causes abnormal electrical signals to be sent to the muscles. In turn, these signals trigger painful, prolonged, and involuntary contractions of muscles. This is where the heart of the dispute lies- differences between the family and the hospital vis-à-vis the approach towards the treatment of John’s dystonia.
Medical Concerns: Although the medical team had gained a certain degree of control over John’s dystonia, but in their estimation, the condition is merely hidden and not gone. The dispute also centers on the consequences in case John suffers a further dystonic episode or, his condition worsens so much that invasive ICU measures are necessary to save his life. It is their professional opinion that, ultimately, John will suffer a dystonic crisis incapable of successful intervention; this is because, over time, John’s cardiac respiratory reserves will decrease to the point of him being unable to withstand a dystonic crisis. The doctors were of the opinion that John’s respiratory capacity is failing due to the administration of painkilling medication to ease the pain brought on by a dystonic episode; whereas the parents are of firm belief that John’s preference would be for his life to be continued for as long as possible by whatever means necessary.
Family’s Concerns: The concerns expressed by the family members were highlighted in the affidavit submitted by John’s guardian ad litem Mr McGrath, “Her (mother) view was that the clinicians were always negative in relation to the prospects for John. It is apparent that she found it frustrating and upsetting that so much of the discussions with the treating doctors concerned the possibility of his early death”. The families pointed out that John’s physical injuries have healed and he just needs time to recuperate further. Their view is that John should be given a chance of life. They also accepted that John would most likely require a lifetime of care but, according to McGrath, “She believed that he could come out of it as a new born baby to the point where he would relearn each step”. The Guardian also pointed out the opinions of John’s father, which were more or less similar to that of the mother, “He expressed the view that John did not seem to be in a lot of pain and he described the situation of John as being like he was in a very long sleep. He noted that his heart, lungs, and liver were fine. He did not need oxygen or life support. Like John’s mother, he emphasised a desire to give John a chance and to treat him in the context of further care needs. He did, however, accept that if that was not working, he would have to accept that situation”.
Relief sought: The hospital thus sought permission to administer such medication, sedation or anaesthesia as might be required to alleviate breakthrough or neurological symptoms, and the permission to withhold certain specified invasive treatments and therapies.
Meanwhile, the position of John’s parents was that they would not consent to a care plan that envisaged a scenario where medication might be administered to a level that caused a risk to John’s life.
“At the heart of this case is the concern of the medical team not to prolong John’s pain and suffering, on the one hand, and the concern of his parents that he should be allowed the chance to recover to the fullest extent possible by whatever means are available, on the other hand. At the moment, these positions are in a precarious – if uneasy – balance. However, these positions may prove to be irreconcilable in the event that John suffers from any further serious dystonic episode. This is the dilemma at the heart of this very sad case”. Highlighting the quandary that came before the Court, the Bench at first addressed the decision rendered on the issue by the High Court. The High Court had concluded that the conduct of the parents in the particular circumstances amounted to a failure, therefore requiring the State, through the court, to supply the place of the parents. Keeping in mind the decision of the High Court, the Court delved into a detailed scrutiny of the constitutional aspects involved-
Constitutional Aspects – Child’s interest, Parental Failure: The key provision of the Irish Constitution involved in the proceedings was Article 42A, which allowed the State to intervene in case the parents fail in their duty to the child to the extent that the welfare of the child was prejudicially affected; the best interest of the child being the paramount consideration. Article 42A recognises family as the natural, primary and fundamental unit group of society possessing inalienable and imprescriptible rights antecedent and superior to all positive law, and as such being the primary and natural educator of the child. “Some decisions made within the Family are decisions by parents in relation to their children, and where it is possible that the parental decision, or the absence of a parental decision can be said to be damaging to the interests of the child. Article 42A.1 is an emphatic statement of the rights of the child, and that there is, therefore, a corresponding duty on parents to uphold and vindicate those rights”.
The Court duly noted that the question of medical treatment is one such area which can pose a distinct problem because parental decisions in relation to medical treatment are not necessarily an example of collective family decision-making about life choices. In common law, any medical procedure requires the patient’s consent; since a child cannot lawfully provide such consent, a substitute consent is necessary. In such circumstances, the rights of the child come to the forefront. One of the objectives of Article 42A.1 is to ensure that such cases were not approached by reference to the objective of maintaining the authority of the family, but rather through the lens of the rights of the child.
Rejecting the argument put forth by the parents that, there must be parental failure to such an extent that the safety or welfare of the child is likely to be prejudicially affected and the case must be exceptional; the Bench observed that if there is parental failure to the extent required by the Constitution and the rights of children were prejudicially affected, then the State could not be barred from acting to protect the child because, ‘exceptionality’ is not a legal test capable of determining this or any other case. It is potentially dangerous that it “may lead to the wrongful downgrading of significant circumstances just because they happen not to be exceptional or to their wrongful upgrading just because they happen to be exceptional” –HH v. Deputy Prosecutor Italian Republic, Genoa,  3 WLR 90.
“Any approach to the question of whether a particular parental decision should be supplanted by the State must give full value and effect to the genuine, heartfelt, and honest response of the family here, even if it runs counter to the entirety of the medical consensus”. The Court duly observed that John’s parents’ response, in this case, has been both exemplary and humbling. The parents, even though now separated, have been with John in the Hospital from the moment he was admitted and have remained involved and the father has made it clear that he sees his role as being as supportive as possible to John’s mother. However, the Court also noted that John’s family had to deal with the confusing medical procedures and specialisations which they had never encountered before and attempt to digest and comprehend sometimes complex medical terms and advice, especially now that the matter has developed legal technicalities.
Regarding Euthanasia: The Court also considered the question of whether the course of treatment proposed amounts to an impermissible acceleration of death and, therefore, euthanasia. The Court however stated that the course proposed by the Hospital, did not amount to euthanasia or the impermissible hastening of death by direct intentional measures. The Bench noted that, “It is perhaps understandable why, particularly in a crisis situation involving engagement with unfamiliar, and perhaps bewildering, medical and legal terminology and procedures, John’s mother might understand the application in this way if, indeed, she does so”.
Upon detailed perusal and appreciation of John’s family’s concerns and their position on the matter, the Court however reluctantly but clearly concluded that, John’s parents’ decision to refuse their consent to any care plan that contemplates, in the event of a dystonic or other medical crisis, the administration of whatever level of medication is required to alleviate suffering, unless invasive therapies and treatments are also made available for the purpose of resuscitation, was a decision which could not be said to be in John’s best interests. The Court further concluded that the Parents’ decision to not give the said assent is prejudicial to his welfare since it was a decision which, if implemented, would be likely on the evidence to cause him extreme and avoidable pain and suffering. It is also clear, on the evidence that any intervention in John’s case will (even if successful in the short term) return him to a weakened state of health, with depleted cardio-respiratory reserves. Thus, albeit the commendable care, love and determination shown by John’s parents, their decision in this single regard can properly be described as constituting a failure of duty.
Other Significant Conclusions: Stating that cases involving the withholding of medical treatment contrary to the wishes of a family of a child involve decisions of enormous importance for everyone involved, the Court also made the following conclusions-
- A child has rights under the Constitution both individually as a person, and collectively as a member of a family. The Constitution recognises the benefits to a child of being a member of a family. The dynamics of relationships are sensitive and important and should be upheld where possible.
- In cases of disagreements between doctors and parents as to medical treatment, it may be necessary to distinguish between consent to treatment and the withholding of treatment.
- In the absence of a specific statutory procedure to resolve disputes as to the future treatment of a child, wardship jurisdiction may be used to determine if the court, in performance of the State’s duty under Article 42A, should supply the place of the parents and provide, in the particular circumstances, consent to treatment. Accordingly, wardship orders should be limited to the relevant decision as to those aspects of medical treatment where there is reason to believe that parental approval will not be provided.
[J.J., In Re., S:AP: IE:2020:000131, decided on 22-01-2021]
Sucheta Sarkar, Editorial Assistant has put this story together.