Vatican City, May 29, 2018 / 01:33 pm (CNA/EWTN News).- 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.”
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We read: Pope Francis encouraged members of ecclesial groups to ‘remain in harmony with the Church, since harmony is a gift of the Holy Spirit.’” YES, “harmony with the Church…” But also been thinkin’ ’bout the Holy Spirit and the polyglot Synodal Casserole!
The Vatican keyed its external and provisional agreement with China to the example of “patience” lifted from former Secretary of State Cardinal Casaroli (instructive coincidence of terms, this!). https://www.pillarcatholic.com/p/pope-francis-said-cardinal-casaroli-is-his-diplomatic-model-so-who-was-cardinal-casaroli
Two straight questions, plus an x-ray of shallow-dish Synodal Casserole:
QUESTION: Are we to expect the Synodal Casserole to have the same flat flavor as the transplanted policy of “patience” from Casaroli in Eastern Europe, and now the sinicized Church? Same policy, same concessions, probably “provisional,” and same outcome?
QUESTION: Wondering, however, if the novelty of lay members of the Synod on Synodality in October 2023 might actually introduce the clerics to the parental notion of “tough love”? The long-awaited, real, and growth-enabling “gift of the Holy Spirit”?
X-RAY: A quarter of a century ago, FR. STANLEY L. JAKI (1924-2009) anticipated the margarine-spread “patience” atop our polyglot Synodal Casserole:
“Those theologians, almost to a man latter-day modernist critics of papal infallibility, seem to overlook a very curious difference between Newman and themselves. While Newman humbly confessed that he had never sinned against the Holy Spirit, they boldly speak in the name of that Spirit. But as all too often in the past, the step from Heiliger Gest (Holy Spirit) to Zeitgeist (spirit of the times) is a very short step. And what if that spirit is merely the Geist to which Hegel paid supreme homage, but which turned out to be his own sadly fallible mind trapped in the labyrinths not so much of its own evolution as of its endless convolutions” (“And on this Rock,” Christendom Press, 1997, p. 118).
Maybe the Synod will give a harmonious ear to the adults in the room–whether seasoned lay people or even shepherd-clerics! The ingredient virtue of “patience,” but also salted with the needed governance of “tough love”?
G.K. CHESTERTON — “Merely having an open mind is nothing. The object of opening the mind, as of opening the mouth, is to shut it again on something solid.”
The Pilgrim Church is a healthy movement forward. Ecclesial movements are expressions of vitality and dynamism. Moving on is far healthier than embracing “stuckedness.”
“Forward?” And then there are those who say that a fixation on change is the most rigid and “stucked” rut of all. The tired world awaits a truly balanced dialogue (!) inclusive (!) of this insight. T.S. Eliot gives us at least a non-ideological starting point about both “stucknesses”:
“We are always faced both with the question ‘what must be destroyed?’ and with the question ‘what must be preserved?’ and neither Liberalism nor Conservatism, which are not philosophies and may be merely habits, is enough to guide us” (“The Idea of a Christian Society,” 1940).