Under the Health Care Consent Act, decisions surrounding the withdrawal of life support often involve consideration of the patient’s prior expressed wishes and belief system. For instance, where an elderly man has clearly conveyed his wish not to be resuscitated in the event of a cardiac arrest, his substitute decision-maker would adhere to these wishes. In contrast to end of life decisions in adults, end of life decisions in those who have not yet articulated wishes and beliefs pose unique challenges for providers of pediatric care. Where there are no prior expressed beliefs or views, at law the consideration of what is in the best interests of the patient involves objective consideration of a fundamental question in palliative and long-term care medicine: at what point is the withdrawal of life supporting measures in the best interests of a patient?

Recently, the Ontario Consent and Capacity Board and the Superior Court considered whether an infant’s parents were acting contrary to their son’s best interests in refusing to consent to a plan of treatment which included provisions for the withdrawal of life support. The case involved an 8 month old infant who suffered a severe hypoxic injury at birth but was resuscitated and maintained on supportive care at the request of his parents. Since birth, the infant had existed in a permanent vegetative state and required invasive intensive care measures. He was unable to interact with any aspect of his environment, feel pain, blink, cough, gag or swallow. His physicians sought to introduce a plan of treatment which involved the withdrawal of mechanical ventilation when the infant’s condition was stable, and a do not resuscitate order in the event that he was unable to maintain respiratory function. The parents declined to consent to the plan of care and requested that all life supportive and resuscitative measures be maintained. The physicians then consulted with the hospital’s internal ethics committee as well as with other pediatric specialists; all of whom supported the plan of treatment proposed by the infant’s physicians.

The physicians sought direction from the Consent and Capacity Board. The Board heard from the infant’s parents and treating physicians. The Board determined that the parents’ refusal to consent to the treatment plan was not in the best interests of the child. The parents were ordered to consent to the plan of treatment. In considering the best interests test; the Board relied on other Canadian and British cases involving patients in persistent vegetative states and ruled:

“Since the withdrawal of treatment … proposed was likely to result in [the patient’s] death, it might be argued that continuing his mechanical respiratory assistance could not logically be a risk because the greatest risk is death. We disagreed. Every living thing eventually dies and the risk is not whether, but when and how, as well as what happens to a person until he or she dies. Those factors had to form part of the discussion of [the patient’s] “well being” … [In determining the patient’s well-being], we were entitled to consider the constant invasions and humiliations to which his inert body was subject. At some point those factors overrode the presumption in favour of continuing life and [the patient] had no countervailing values or beliefs to those factors.”

The parents appealed the Board’s decision. The plan of treatment was not implemented pending an urgent hearing of the appeal.

On appeal, the court upheld the Board’s decision to order the parents to consent to the plan of treatment in oral reasons, failing which the Public Guardian and Trustee would be appointed as the infant’s substitute decision-maker.

This decision highlights the challenges faced by providers of pediatric palliative care. It suggests that, where a newborn has a severe and permanent underlying condition requiring life supporting interventions, and where intensive care measures will not convey benefits but will inflict greater harm (including a consideration of quality of life and human dignity), care providers should work with parents to weigh the benefits and harms of decisions associated with providing life-sustaining, futile care. Where the views of parents and care providers do not converge, physicians should be encouraged to seek direction in order to ensure that these difficult legal and ethical decisions are subject to careful consideration and review.