Bambino Gesu hospital releases charter to protect the rights of terminally ill children

The Vatican’s children’s hospital, Bambino Gesu, has issued a “Charter of Rights of Incurable Children,” which outlines the basic rights of both parents and children. Mariella Enoc, the hospital’s president, said at its release, “We will pass it through the European Parliament, to all the member countries. 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.”

This charter comes one month after the death of Alfie Evans, whose short life was punctuated by fierce legal battles and political debates over his treatment. Bambino Gesu had offered to take Alfie in and provide for his palliative care, however, the transfer was denied by British courts, despite Alfie having been granted Italian citizenship.

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Enoc stressed the importance of a therapeutic alliance between the patient’s family and the doctors. She said, “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.”

The 10 articles in the Charter of Rights for Incurable Children are as follows:

• The child and his family are entitled to the best possible relationship with doctors and health personnel
• The child and his family have the right to health education
• The child and his family have the right to obtain a second opinion
• The child and his family have the right to receive the most competent diagnosis
• The child has the right to access the best experimental treatment
• The child is entitled to cross-border health transfers
• The child has the right to continuity of care and palliative care
• The child has the right to respect his person even in the final phase of life, without therapeutic obstinacy
• The child and his family have a right to psychological and spiritual accompaniment.
• The child and his family have the right to participate in care, research and reception activities

The charter notes that in the case of Alfie Evans, as well as the case of British infant Charlie Gard, who died at 11-months-old in 2017, the most controversial decisions did not allow parents to transfer their children abroad. This is touched upon by the 6th article of the charter. If the charter passes through the EU, then we may never see another case like Evans’ or Gard’s.

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Monsignor Paglia, President of the Pontifical Academy for Life, commented on the necessity of this charter:

“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.”