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Bambino Gesu: “Charter of Rights of the Not Curable Child”

Presentation during a Seminar of Doctors, Politicians, Bioethicists

The Holy See’s Bambino Gesu pediatric hospital presented a “Charter of Rights of the Not Curable Child,” to promote the therapeutic alliance and the support of children having grave and incurable illnesses, reported “Vatican News” in Italian. It’s a proposition to guarantee rights to the child with special needs without the possibility of healing, but with the possibility of care, including during the terminal phase of life. “We will pass it through the European Parliament, to all the member countries,” said Mariella Enoc, the hospital’s president, and then to “all those that, as associations of parents or of sick persons, or other pediatric hospitals in the world and European ones, want to consider it.”

The document was presented during a seminar open to doctors, politicians, bioethicists and men of the Church, on Monday morning, May 28, 2018 in Rome. The “Charter” was born of the elaboration of previous national and international charters of the rights of children in hospital, in the light of the progresses made by medicine and of more recent European directives in the area of rights to trans-border health care. Present, among others, was the President of the Pontifical Academy for Life, Archbishop Vincenzo Paglia.

The text contains six articles that stress the importance of the therapeutic alliance between the patient’s family and the doctor, with full participation in the course of care; the right of a “second opinion” and to further diagnostic reflection; the right to choose a health structure of their choice — including being transferred to a different country from their own –; the right to access experimental and palliative care and the right to psychological and spiritual accompaniment.

The Bambino Gesu’s President, Mariella Enoc, stressed the topicality of this document, a few weeks after the death of Britain’s little Alfie Evans, after months of legal battles between the Liverpool hospital and the child’s parents. “It’s an alliance that must truly be made. I asked the President of the Alder Hey Hospital [pediatric hospital of Liverpool] to make an alliance between the Bambino Gesu and his hospital; unfortunately, that was not accepted. However, I hope that with many other hospitals, including European ones, this alliance may be accepted.”

In his intervention Monsignor Paglia stressed: “It is indispensable to meet together to rediscover the therapeutic alliance or love alliance between doctors, members of the family, the sick and friends, to accompany, without ever abandoning, even those that aren’t curable . . . I believe indispensable a culture that contests and is indignant against a daily rejection.”

Monsignor Francesco Cavina, Bishop of Carpi, spoke of his experience of support of little Alfie’s parents, Thomas and Kate Evans. “When the Holy Father asked me the reasons why I was interested in the case,” I answered: “Because I also thought of my life, because today there is this child but tomorrow that could be each one of us, from the moment when the society, or those that hold power, consider that our life – my life – has no longer any value or meaning.’”

Daniele De Luca, Director of the New-born Paediatric and Reanimation Service of the “Antoine-Beclere Hospital of Paris illustrated the different therapeutic approaches of European countries. “We spoke of England and we heard sufficient talk of it. If we look, for example, at the Low Countries or Belgium, there are in fact regulations for euthanasia and, in these countries, for example, premature little ones are much less reanimated in regard to what is done in other latitudes. The situation is more complex: there are differences from one center to another: let’s say, therefore, that it depends on the sensibility of doctors, of directors and, consequently, on the ambiance of “this” department rather than of another. Consequently, yet again, given this variability, one understands how important it is to form doctors and to have this culture pass.

The Editor-in-Chief of Avvenire, the newspaper of the Italian Episcopal Conference, Francesco Ognibene, addressed this topic of the ethical responsibility of the media. According to him, the “care of words” is very important because ‘not curable’ and ‘incurable’ don’t have the same value and, consequently, information on ethical topics can’t be improvised, but should always be more documented.  

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