After Alfie Evans, Vatican Issues ‘Charter of the Rights of the Incurable Child’

Alfie
Alfies Army/AP

The Vatican has struck back at the system that decreed the death of young Alfie Evans, publishing a ten-point “Charter of the Rights of the Incurable Child” Monday.

The Alfie Evans affair, which pitted the rights of the family against the authority of the state, ended in a death sentence for the British infant who was prohibited from traveling to another country for care. The Vatican’s children hospital, Bambino Gesù, was caught up in the middle of the affair after Pope Francis weighed in on the side of Alfie’s parents and the hospital offered to treat the child for free.

Italy even granted Alfie citizenship to ease the passage to Italy should the UK have permitted him to be moved.

In the introduction to the new Charter, which was released exactly one month after Alfie’s death, doctors from Bambino Gesù have addressed of the fundamental bones of contention in the Alfie Evans case: the difference between caring and curing. Whereas many patients may be declared incurable—at least within the limits of modern medicine—no patient should be deprived of care, the document insists.

Not all treatment of patients will result in a cure, but this does not relieve healthcare professionals and others of their duty to provide care.

In Monday’s roll-out of the Charter, Italian Archbishop Vincenzo Paglia, President of the Pontifical Academy for Life, pulled no punches in his critique of the way the Alfie Evans case was treated.

“It seems absurd that a judge’s sentence could overcome the relationship between a parent and his child,” the archbishop told attendees at the event.

“When we end up handing over life to a judge’s decision, we are finished,” he said. “All of us.”

The new document stresses that the nuclear family should be in a position of protagonist, or central actor and not merely a passive recipient, of care decisions—together with the healthcare team. In the recent Alfie Evans case, the decisions of the child’s parents carried no weight and were subordinated to the power of the state.

In its Decalogue of rights of the incurable child, the Vatican-backed charter says children with terminal diseases have the right to second opinions and better diagnostic and palliative care, as well as the right to explore experimental treatments and to be moved across international borders.

Observers of both the Alfie Evans case and its predecessor—the 2017 Charlie Gard case—will have little trouble discerning a sharp critique of the way those situations were handled.

Both infants suffered from unidentified or rare degenerative diseases and were denied the right to experimental treatment and international travel, despite the fact that medical personnel outside the UK were willing to provide treatments and donors were covering all expenses.

In each case, the Bambino Gesù offered to receive the children and provide for their care, but in both cases, British courts and hospitals denied the request to transfer.

Article 6 of the new Charter underscores the family’s right to take advantage of cross-border healthcare. The family has the right to “the choice of a doctor, medical team and healthcare facility of their trust, even if they move to a country other than their own” and this right must be respected by the facility where the child is hospitalized, it states.

The Vatican document highlights a fundamental difference in understanding of the dignity of uncurable children since it is based on the conviction that all human beings have an inviolable dignity and there are no lives that are not worth living.

Follow Thomas D. Williams on Twitter

.