Parents appeal decision to remove allowing hospital to remove child’s breathing tube

The case landed before the courts after the child’s parents refused to consent to the removal of the mechanical ventilation followed by minimal level of care as recommended by the Sainte-Justine Hospital’s medical team. The boy has been in a coma since this past June after being found at the bottom of the family pool where he had been submerged for 15 to 20 minutes. The child’s prognosis is grim and devastating, pointed out Justice Jolin in Centre hospitalier universitaire Sainte-Justine c. A.P., 2022 QCCS 4033. According to the Glasgow Recovery Scale, a gauge that describes the extent of impaired consciousness, the child is in a vegetative state. He has some brainstem reflexes that allow him to breathe and move his eyelids but he cannot see nor hear. He opens and closes his eyes but has no awareness of his environment or his own existence, noted Justice Jolin.

According to doctors, the child’s condition has deteriorated since admitted to hospital, and the presence of an endotracheal tube is more harmful than beneficial. Extubation, admittedly a risky move that could lead to his death, is the best way to determine whether he is able to breathe on his own, which would allow the parents to eventually bring him home as they wish, maintain the medical team.

Parent’s refusal

But the parents insist they are justified to refuse the proposed medical treatment plan because it does not provide for reintubation if extubation fails, and assert their approach is more cautious and conservative, and one that would maximize their child’s chances of survival. They also allege that, because of comments made by some members of the medical team, that the recommendations made by the doctors are dictated by moral imperatives and financial considerations in order to save costs. Faith also plays a role in the parent’s decision-making. The parents believe that their faith in God leads them to believe that their child will emerge from the coma and make a full recovery.

Justice Jolin, while expressing sympathy for the parent’s predicament, authorized doctors to proceed with the treatment plan, which includes extubation. “Despite all the empathy it can summon, the Court concludes that the parents’ refusal to consent to the plan is not justified and is contrary to (the child)’s best interests,” said Justice Jolin.

That finding is in line with case law, heeding guidance from a 1986 Quebec Court of Appeal decision that set the tone for decades to come in spite of rapid medical technological advances, noted Michel Giroux, director of the Institute for Research and Consultation in Ethics and Law (ICRED) and Ethics Advisor to the Health Research Fund. In Quebec, Articles 10 to 25 of the Civil Code of Quebec provide the legal framework that serves as a guidepost for the courts to decide the fate of an application for authorization to provide care. Under article 11, no one may be subjected without his or her consent to care of any kind. But for minors under the age of 14, it is the person who has parental authority that has the power to make those decisions. Except following the landmark Appeal Court decision in Couture-Jacquet c. Montreal Children’s Hospital, the legal representative’s power to refuse care is relative, said Giroux. Unlike the absolute power of a person of full age to refuse care for himself, the person bestowed with parental authority must act in the child’s best interest and cannot simply refuse treatment that would be unjustified in light of the child’s health, added Giroux.

“The parents’ decision must be looked at with care and the court should not substitute its own decision for the parents’ decision according to its goodwill, its whim or subjectivity,” explained Giroux, who was cited in the ruling. “When the court intervenes, it is because the parents’ decision seems to be manifestly unreasonable, very subjective, and does not take into account the clinical reality as well as the reality of the child’s whole person.”

Suffering

The child’s suffering is another element that Justice Jolin also took into account, noted Dupin. Ever since the accident, the child has had episodes of dysautonomia, a group of medical conditions caused by problems with the autonomic nervous system, which leads his body to stiffen, often in incongruous positions. According to experts, any form of stimulation, such as the presence of the endotracheal tube, increases the frequency and intensity of these painful episodes. Medication may reduce the frequency or intensity of episodes, but it cannot eliminate them. “Suffering is not a decisive element, but it is important,” said Dupin. “It is a factor that contributes greatly to the understanding of the interests of the child.”

But Giroux believes that suffering can play a more pronounced role in the judge’s decision in light of Article 12 of the Civil Code. If a parental authority grants consent to the treatment, they must ensure that the care will be beneficial despite the severity and permanence of some of its effects, that care is appropriate in the circumstances, and the risks presented are not out of proportion to the expected benefit. “If the decision of the parental authorities induces suffering, at some point there must be a benefit greater than the suffering to justify it,” said Giroux. “if the parents’ decision has the effect of inducing suffering, that doesn’t work.”

The interplay between faith and medical expertise was dealt with discernment by Justice Jolin, assert Dupin and Giroux. Justice Jolin noted that the parent’s faith in God, “omnipresent in their exchanges with the medical team,” led them to reject any form of medical treatment that could cause their child’s death and to dismiss the unanimous opinion of experts. Taking decisions based on religious grounds are not excluded by the courts nor is it excluded by legislation, said Giroux. But only adults can invoke faith to take health-based decisions, added Giroux. “When it comes to a child, it is very different, particularly if there is intolerable suffering for the child,” said Giroux. “Parental authorities must represent the best interests of the child. It must be rational. In this case, it was not rational.”

The case is expected to be heard shortly by the Quebec Appeal Court.

Mona Kayal of Monette Barakett Avocats LLP, who represented the hospital, declined to comment. Montreal health lawyer Patrick Martin-Ménard, who represented the parents, did not respond to queries.