Justice Scalia famously observed in the landmark case of Cruzan v Director, Missouri Department of Health (1990)110 SCt2841(US SC) that ‘the point at which life becomes “worthless”, and the point at which the means necessary to preserve it become “extraordinary” or “inappropriate”, are neither set forth in the Constitution nor known to the nine Justices of this Court any better than they are known to nine people picked at random from the Kansas City telephone directory.’
The curious case of Charlie Gard and the legal appeals before every conceivable authority have garnered unprecedented public attention. Various legal, moral and ethical issues were discussed at great length both inside and outside the courtrooms. Charlie Gard was an English boy suffering from a severe (and rare) mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).
Mutations in a gene cause this debilitating disease which leads to the death of fuel-giving mitochondrial cells in every part of the human body. Charlie’s brain, muscles and ability to breathe were all affected and hence he became dependant on the ventilator. He became persistently encephalopathic, meaning that there were no usual signs of normal brain activity.
Hospital authorities at London’s Great Ormond Street Hospital (GOSH) had informed Charlie’s parents of nucleoside treatment, a form of therapy which has been used on patients with a less severe mitochondrial condition (TK2 mutation). But preparations for starting the experimental treatment were stopped when Charlie suffered a major episode of brain seizure. Hospital authorities then concluded that the proposed treatment would be futile and would only prolong Charlie’s suffering and thus approached the High Court for an order stating that it would be in his best interests for artificial ventilation to be withdrawn and only palliative care provided which was contested by his parents. Charlie’s parents contended that they alone had the right to decide what treatment Charlie should undergo.
Charlie’s parents also contacted an American professor who agreed to treat Charlie with experimental (and untested) drugs. English Courts in earlier similar cases have reasoned that a child selfevidently lacks the capacity to make decisions about medical treatment and thus such decisions are, in the first instance, taken by those having parental responsibility in consultation with, and on the advice of, the doctors treating him or her. But in the event of an important disagreement between doctors and a child’s parents, either side can invoke the inherent jurisdiction of the Family Division of the High Court relating to children, and a judge of the Division will decide what course of treatment is in the best interests of the child. The High Court in Great Ormond Street Hospital v. Constance Yates, Chris Gard, Charles Gard (A child by his Guardian Ad Litem) [2017] EWHC 972 (Fam) ruled in favour of the hospital.
The High Court appointed a guardian to represent Charlie’s interests throughout the proceedings, who in turn appointed legal representatives. The High Court heard extensive oral evidence from the clinicians treating Charlie as well as various other UK doctors whom the hospital had asked to give second opinions and from a doctor whom the parents had been permitted by the court to instruct to give evidence.
All the doctors opined that the treatment proposed by the parents to be given to Charlie in the US would be of no effective benefit to him. On the facts, the High Court concluded that Charlie had already suffered structural brain damage, almost entirely irreversible and the doctor in the US who was offering the treatment favoured by the parents conceded that the chances of its securing meaningful brain recovery were very less and the proposed treatment would not only be futile but might well cause pain, suffering and distress to him.
Declaring the welfare of the child as the top most priority, the High Court observed that ‘though parents with parental responsibility have the power to give consent for their child to undergo treatment, as a matter of law, overriding control is vested in the court exercising its independent and objective judgement in the child’s best interests’. Also ‘best interests’ encompass medical, emotional, and all other welfare issues.
Rejecting the parents’ objections, the Court reasoned that as there was a consensus from all doctors, including the medical expert instructed by the parents, that nucleoside treatment would be futile, Charlie need not undergo the experimental treatment as it could possibly subject him to pain.
Thus, the High Court concluded that maintaining life-sustaining treatment was not in Charlie’s best interests nor was the proposed experimental treatment. In the seminal decision of Airedale National Health Service Trust v Bland, [1993] 1 All ER 821 (House of Lords), Bland was injured in the Hillsborough Field tragedy and was left in a persistent vegetative state.
The doctors finally decided to remove the feeding tube to put an end to his life. The question before the House of Lords was whether life support could be withdrawn from a patient who was not able to give informed consent about the matter. The Law Lords decided that there was no duty to treat if treatment was not in the best interests of the patient. As there was no prospect of the treatment improving the patient’s condition the treatment was futile and there was no interest for Bland in continuing the process of artificially feeding him upon which the prolongation of his life depended.
In Re A (Conjoined twins: Surgical Separation) [2001] 2 WLR 480, conjoined twins Jodie and Mary were joined at the lower abdomen. They could be successfully separated, but the operation would kill the weaker twin, Mary. But without an operation both would die. As the parents did not consent to the operation, the matter went to the courts. The Court of Appeal held that the proposed operation would not be unlawful.
The Court of Appeal reasoned that though it would involve the positive act of invasive surgery and Mary’s death would be foreseen as an inevitable consequence of an operation which was intended, and was necessary, to save Jodie’s life. But Mary’s death would not be the purpose or intention of the surgery, and she would die because her body was never viable. It declared that a child’s parents having parental responsibility have the power to give consent for their child to undergo treatment, but overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.
Charlie’s parents unsuccessfully appealed to the Court of Appeal. Then the Supreme Court while upholding the Court of Appeal observed In the Matter of Charlie Gard (UK SC, 19 June 2017) that the European Court of Human Rights had firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child’s rights must be the paramount consideration and in case of any disagreement between them the child’s interests must prevail. Various legislations speak of ‘best interest of child’ as the guiding principle.
As per the provisions of The Children Act 1989, whenever a court determines any question with respect to the upbringing of a child, the child’s welfare is the court’s paramount consideration. Also, article 3 (1) of the United Nations Convention on the Rights of the Child declares that, “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration”. Article 24 of the European Union’s Charter of Fundamental Rights deals with the rights of the child.
It states that children shall have the right to such protection and care as is necessary for their well-being. They may express their views freely. Such views shall be taken into consideration on matters which concern them in accordance with their age and maturity.
Also in all actions relating to children, whether taken by public authorities or private institutions, the child’s best interests must be a primary consideration. The matter then finally reached the European Court of Human Rights (ECtHR).
The court extensively referred to the landmark decision of Lambert v France (ECtHR, 2015) wherein Vincent Lambert sustained serious head injuries in a road-traffic accident which left him tetraplegic and in a chronic vegetative state. A dispute arose regarding the withdrawal of his artificial nutrition and hydration. The parents alleged that it would be in breach of the State’s obligations under Article 2 of the Convention, would constitute ill-treatment amounting to torture within the meaning of Article 3 and would also infringe his physical integrity, in breach of Article 8.
The Court after a detailed discussion of the various facets of the issue concluded that the withdrawal of Lambert’s artificial nutrition and hydration under the procedure prescribed by the domestic French law did not constitute a violation of Article 2. In Charlie’s case, the ECtHR observed that no consensus exists in practice in favour of authorising the withdrawal of treatment designed only to prolong life artificially as in most countries treatment may be withdrawn subject to certain conditions.
In those countries which permit it, it is provided for either in legislation or in non-binding instruments like a code of medical ethics. Also, there is consensus as to the paramount importance of the patient’s wishes in the decision-making process. There are provisions in most of the legislations for patients to make advance directives. However, in the absence of such directives, the decision lies with a third party which can be either the doctor treating the patient, persons close to the patient or the courts.
The withdrawal of treatment is also subject to other conditions such as the patient must be dying or be suffering from a condition with serious and irreversible medical consequences, the treatment must no longer be in the patient’s best interests, it must be futile, or withdrawal must be preceded by an observation phase of sufficient duration and by a review of the patient’s condition. The ECtHR observed that Article 2 of the Convention states that everyone’s right to life shall be protected by law and no one shall be deprived of his life intentionally. Article 8 declares that everyone has the right to respect for his private and family life.
The ECtHR observed that it has on many occasions considered the way domestic authorities intervene when families are in conflict, often in situations relating to care and custody arrangements.
In such cases the Court has frequently recalled that the decisive issue is whether the fair balance that must exist between the competing interests at stake – those of the child, of the two parents, and of public order – has been struck, within the margin of appreciation afforded to States in such matters, taking into account, however, that the best interests of the child must be of primary consideration (X v. Latvia [GC], Paradiso and Campanelli v. Italy [GC], Dubská and Krejzová v. Czech Republic [GC]). The Court further observed that as in these types of cases where moral and ethical issues are also involved, the margin of appreciation of the domestic authorities is wider (Dubská and Krejzová v. Czech Republic [GC] and Parrillo v. Italy [GC]). Article 8 of the convention protects the individual against arbitrary action by public authorities.
As the legal framework in place was appropriate and the authorities had a margin of appreciation the ECtHR held that it was not for the Court to substitute itself for the competent domestic authorities but rather to review under the Convention the decisions that those authorities have taken in the exercise of their power of appreciation.
Appreciating the judgments in English courts as they were meticulous and thorough, heard extensive and high-quality expert evidence, ensured that all concerned were represented and were reviewed at three levels of jurisdiction with clear and extensive reasoning giving relevant and sufficient support for their conclusions at all three levels, it concluded that the domestic judgments did not amount to an arbitrary or disproportionate interference.
Though Charlie’s parents have failed to change the prevailing legal test yet this tragic case has highlighted the complex legal, ethical and moral issues involved in the treatment (and withdrawal of treatment) of terminally ill patients who are not able to give informed consent.
(The writers are Mumbai-based advocates and legal consultants)