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.

The Royal College of Pediatrics and Child Health produced a document in March 2015—”Making Decisions to Limit Treatment in Life-limiting and Life- threatening Conditions in Children: A Framework for Practice”—that the UK courts use in such cases:

The RCPCH believes that there are three sets of circumstances when treatment limitation can be considered because it is no longer in the child’s best interests to continue, because treatments cannot provide overall benefit:

When life is limited in quality — This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise: [ . . .]

Lack of ability to benefit; the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life. . . . In other children the nature and severity of the child’s underlying condition may make it difficult or impossible for them to enjoy the benefits that continued life brings. Examples include children in Persistent Vegetative State (PVS), Minimally Conscious State, or those with such severe cognitive impairment that they lack demonstrable or recorded awareness of themselves or their surroundings and have no meaningful interaction with them, as determined by rigorous and prolonged observations. Even in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them. Individuals and families may differ in their perception of benefit to the child and some may view even severely limited awareness in a child as sufficient grounds to continue LST. It is important, here as elsewhere, that due account of parental views wishes and preferences is taken and due regard given to the acute clinical situation in the context of the child’s overall situation.

The primarily legal test related to this situation is outlined in the court case of Aintree University Hospital NHS Trust v James (2013):

Hence the focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.” . . .

“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.

What is the treatment Alfie’s parents are seeking?

The court documents say the father wants Alfie to be permitted to travel to the Bambino Gesù Hospital in Rome. Bambino Gesù produced an assessment report on the possibility of transferring Alfie to Italy that says that “a prolonged ventilator support, with surgical tracheostomy should be performed.” But the report also warns, “It is possible that during the travel Alfie may present continuous seizures due to stimulations related to the transportation and flight; those seizures might induce further damage to brain, [putting] the whole procedure of transportation at risk.”

The father has said that if the transfer to Rome doesn’t work, Alfie should be further transferred to a hospital in Munich. If that too fails, he believes Alfie should be allowed to go home and die “when he decides to.”

How is this case like the Charlie Gard case?

The situation between Alfie Evans and Charlie Gard is eerily similar. Both involve young parents, an infant with irreversible brain damage, a desire to move the child to Bambino Gesù Hospital, and a consensus that no cure was likely possible.

A key difference is that the arguments in the Gard case were primarily focused on the suffering of the child that could result in his being moved from the UK hospital. Those concerns, while not entirely absent, are not the primary deciding factor in the government’s decision to deny additional treatment.

What is the primary ethical issue in this case?

As with the Charlie Gard case, the main ethical issue is about the scope of parental rights, and who should be allowed to decide what is in the “best interests” of the child in regards to additional treatment.

If Alfie’s parents decided to discontinue life-sustaining treatment (as Gard’s parents eventually did) as being in the child’s best interest, there would be no controversy. Similarly, few people would object to the state seeking extraordinary measures to sustain the life of a child.

The concern stems from the state having the power to decide to allow a child to die against the wishes of the parents. As Anne Rathbone Bradley wrote concerning the situation with Charlie Gard:

The state is not a legal guardian of people, an entity that assigns rights and dignity. Quite the opposite: The state is a construct that we use (often not very effectively) to protect rights and dignity that we already have. The biggest concern we should have with the state is that it has a strong tendency to violate its position, and history is a powerful reminder of this tendency. The state in fact, has no dignity, only people do.

As such, the family is the most important societal mechanism for protecting and defending the rights and dignity which come from our Creator. Where the family or community cannot do this, we employ the state, bounded by the rule of law and respect for individual rights, to protect those rights.

When the state crosses that boundary and assumes the role of parent, we can only expect that the natural role of families, churches, and communities will be eclipsed, and this will erode our natural rights and dignity. Parents must be the ones to make the choices about the care of their children. This is why Charlie’s legal battle matters so much.

The Gard case was complicated by the credible claim and concern that moving Charlie would be of no benefit and could cause additional suffering. In the situation with Alfie, though, there are fewer qualms about him suffering because of the transportation. Thus, the state has a weaker claim that it’s in the “best interest” of the child to receive palliative care leading to death rather than allowing the parent’s preference of additional treatment.

What is the current status of the case?

Life support for the child was turned off on Monday after a High Court judge dismissed further appeals. On Wednesday, April 25, the Court of Appeal upheld the earlier High Court ruling.

Alfie’s father said his son is continuing to breathe unassisted, and his life support should be reinstated.