A month after the death of UK toddler Alfie Evans, the Vatican's Bambino Gesu children's hospital issued a new charter on the “rights of the incurable child,” outlining basic rights for both parents and children.
Among other things, the charter says children with terminal diseases have the right to second opinions and better diagnostic and palliative care, as well as the right to better experimental treatments and to be moved across international borders.
The charter was presented May 29 as part of a seminar course titled “Are there incurable children?” It took place a month after the April 28 death of Alfie Evans, a gravely ill toddler who passed away just before his second birthday after being removed from life support during an intense legal battle over his treatment.
Consisting of 10 articles, the hospital's new charter draws on previous national and international charters for the rights of hospitalized children, and affirms that proper medical care does not involve just looking for a cure, but also includes palliative care, as well as spiritual and psychological support for the family.
A summary of the charter posted to Bambino Gesu's website refers to the case of Alfie Evans, as well as that of British infant Charlie Gard, who died at 11 months old in 2017 after a similar legal battle over his treatment and transfer.
Both children suffered from either unidentified or rare degenerative diseases and were denied the right both to further experimental treatment and international transfer, despite the fact that doctors outside of the UK were willing to provide experimental treatments.
In both cases, Bambino Gesu offered to take the children and provide for their palliative care, and in both cases the request to transfer was denied by British courts and hospitals, despite the fact that in Evans' case, the child was granted Italian citizenship.
Article 5 of the new charter says children “have the right to use experimental diagnostic-therapeutic protocols approved by ethics committees that avail themselves of specific pediatric skills,” and that risk factors must naturally be reduced as much as possible.
The charter notes that in the cases of Evans and Gard, the most controversial point was the decision of hospitals and judges not to authorize the transfer of the children abroad, despite their parents' wishes.
To this end, it notes in the charter that European citizens have the right to receive care in every country that is part of the European Union, choosing whichever healthcare facility they wish for either planned or unplanned care.
Also highlighted is the child's right to take advantage of cross-border healthcare. In article 6, the charter stresses that the right of the family 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” must be respected by the facility where the child is hospitalized.
In article 7, which touches on palliative care, the charter also emphasizes that whenever possible, the child has the right “to stay in their own home for their health needs, even complex ones.”
Likewise, the child also has a right “to receive adequate pain treatment, both physical and psychological.” Symptoms and suffering, the document says, “must be possibly prevented and always alleviated.”
Palliative care, the charter emphasizes, “must be integrated early in treatment planning as a complement to curative and rehabilitative measures.”