The court and Alfie’s parents disagree about what is in the best interest of the child. The court documents state the father’s “core dilemma, from which he struggles to escape” is that “whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope.”

While parents are generally presumed to have the authority to make decisions about their children’s medical treatment, that parental right is not considered absolute.

What is the Alfie Evans controversy?

The case of Alfie Evans involves a critically ill infant in England. Similar to the 2017 case of Charlie Gard, this situation has raised questions around the world about whether the state has the absolute authority to block parental rights in determining the care of a child.

Alfie’s parents want to move him to a hospital in Rome, Italy, for treatment, but British and European courts have blocked their decision and sided with doctors who say that switching to palliative end-of-life care is in the best interest of the child.

Who is Alfie Evans?

Alfie is an English child born to Tom Evans and Kate James on May 9, 2016. Two months after he was born, his parents and his doctor began to have concerns about his development.

On December 14, 2016, Alfie was taken to the emergency room because of coughing, high temperature, and seizures. Doctors diagnosed the child as having a degenerative neurological condition that they have yet to be able to identify. According to the medical reports, Alfie does not respond to loud noises, central painful stimuli or peripheral stimuli, and is profoundly hypotonic (abnormal loss of muscle control). He has been on ventilation and in intensive care ever since entering the hospital.

The hospital where Alife is being treated, Alder Hey Children’s NHS Foundation Trust, petitioned a UK court to remove life support, claiming “continued ventilatory support is not in Alfie’s best interests and in the circumstances it is not lawful that such treatment continue.” Alfie’s parents have sought to block the removal of life-sustaining treatments.

Why isn’t the court allowing Alfie’s parents to make the decision about their child’s treatment?

The court and Alfie’s parents disagree about what is in the best interest of the child. The court documents state the father’s “core dilemma, from which he struggles to escape” is that “whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope.”

While parents are generally presumed to have the authority to make decisions about their children’s medical treatment, that parental right is not considered absolute. According to the British Medical Association, when there is a disagreement about the best interest of the child, the UK courts must weigh the evidence and determine what should be done:

The moral authority behind parental responsibility depends in large part on the entirely reasonable supposition that parents will act in the best interests of their children. If it appears, however, that parents are following a course of action which is contrary to their child’s interests, their decisions can be challenged. Where doctors believe that parental decisions are not in the best interests of the child, it may be necessary to seek a view from the courts, whilst meanwhile providing only emergency treatment that is essential to preserve life or prevent serious deterioration. When asked to decide about treatment, the courts recognise their duty to protect children and have almost invariably said that serious treatment should be given against the wishes of parents where there is a good chance of it succeeding or providing significant benefit to the child. The courts are required, in their decision making, to have regard to the rights given force by the Human Rights Act, and to have the child’s welfare as the paramount consideration.

What is Alfie’s current medical condition?

At a hearing of the Family Division of the High Court in February, the medical team testified:

Alfie has shown severe/profound developmental delay and has lost what skills he had acquired entirely. He will never make any developmental progress (gross motor, fine motor, vision, hearing, social, emotional). Alfie is not responding to any painful or uncomfortable stimuli other than with seizures or with spinal reflexes to uncomfortable/painful peripheral stimuli. Due to his underlying neurological process it is highly unlikely that Alfie has any awareness of pain or discomfort and does not show any neurological signs that would suggest that he is in pain or discomfort such as increase of heart rate, blood pressure, respiratory rate to uncomfortable/painful stimuli. It is likely that the pathways that would usually transmit the stimuli are interrupted/dysfunctional making a cognitive awareness of pain unlikely. However, as Alfie is unable to communicate, it is important to consider whether, despite his inability to respond, Alfie may still have some awareness of pain and discomfort and this should therefore be kept to an absolute minimum considering that he might still be able to “feel” uncomfortable sensation I think it is unlikely that Alfie has any ability to be reassured by the voices and touch of his parents.

What is the legal basis for the decision?

The Children’s Act of 1989 states that “When a court determines any question with respect to (a)the upbringing of a child; or (b)the administration of a child’s property or the application of any income arising from it, the child’s welfare shall be the court’s paramount consideration.”

The UK court’s legal reasoning appears to be that the government is seeking the “best interest” of Alfie and thus has an obligation that supersedes the desire of the parents to seek additional treatment.

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