by Constance Roques with Anita Bourdin
Italian Cardinal Elio Sgreccia, former President of the Pontifical Academy for Life, analyzed little Charlie Gard’s case and offered “10 critical points” for consideration in the Italian daily La Stampa, on Monday, July 3, 2017.
We recall that Charlie Gard was born on August 4, 2016 and suffers from mitochondrial depletion syndrome, which has affected his brain. He receives assistance to breathe, is hydrated and fed through a tube, but receives no other care.
Give Care Even when One Cannot Cure
Cardinal Sgreccia stressed first of all that “the non-curable character can never be confused with incurability” (1).
He explained: “A person affected by an ailment considered, in the present state of medicine, as incurable, is paradoxically the subject that, more than any other, has the right to request and obtain continuous assistance and care, attention and devotion: it is a cardinal principle of the ethics of care . . . The human face of medicine is manifested precisely in the clinical practice of ‘taking care’ of the life of the suffering and the sick.”
Cardinal Sgreccia then affirmed the intrinsic dignity (2) of every human being and the rights that stem from it, regardless of his state of health: “The right to be continually the object, or better still, the subject of attention and care on the part of members of the family and others, lies in the dignity of a human person, including a new-born, sick and suffering, and never ceases to be possessed.”
Feeding and Hydration Are Not Therapies
He then recalled the duty to feed and hydrate (3): they are not aps of therapies but the minimum necessary to survive of every human being: “Artificial feeding-hydration through a nose-gastric tube in no case can be considered as a therapy . . . Water and food do not become medications by the sole fact that they are administered artificially; consequently, interrupting them is not like suspending a therapy, but it is to let someone die of hunger and thirst who simply cannot feed himself autonomously.
The Parents’ Decision
Cardinal Sgreccia pointed out that there must not be a caesura between the doctors’ gestures and the parents’ will (4): “The cardinal idea that founds the informed consensus is linked to the principle according to which the patient is never an anonymous individual . . . but a conscious and responsible subject . . . This implies the necessity that he be involved in the decisional processes that concern him, in a dialogic relation that avoids his finding himself in the situation of having to suffer passively the decisions and choices of others. The history of little Charlie proves on the contrary that, in the course of time, a dynamic has been created of substantial detachment between the decisions of the medical team and the will of the parents.”
An Integral Palliative Approach
Cardinal Sgreccia declared himself in favor (5) of an “integral palliative” approach: “It is possible that the experimental therapy does not give the medical results expected, but it is also true that Charlie’s sufferings call for an integral palliative and systematic approach that could hypothetically accompany the experimentation itself.”
To Keep the Pain under Control
Cardinal Sgreccia recommended (6) to keep the pain under control”: “ In our opinion, the principle of the best interest of the minor hardly entails, or better, hardly legitimizes a passive form of euthanasia as that which was decided to practice on little Charlie. We believe that his best interest lies in the direction of assuring him the most dignified existence possible, through an opportune antalgic strategy, which enables to keep the pain under control should it prove to be impossible to follow the route to access the experimental protocol already underway in the United States. It is exactly what Charlie’s parents have not ceased to request up to today.”
The Opinion of the European Court
The Cardinal believes (7) that the European Court did not respect these criteria: ‘The European Court of Human Rights has glided in an unbelievable way on all the aspects of content listed up to here and it also seems that it went beyond, assuming a purely procedural position, in the name of the principle of the margin of appreciation … It considered that it should not enter the subject of the issue of the suspension of artificial feeding-hydration-respiration in the name of that sovereign autonomy of the Member States, which authorizes them to regulate at their discretion the themes of the ethically most complicated aspects, such as the case of the practicability or not of passive euthanasia on a new-born.”
A “Rampant Disposable Culture”
Cardinal Sgreccia lamented the “rampant disposable culture”: “Hidden behind each aspect of this story, although never mentioned, is the idea of the efficacy in the management of health resources that pushes to make use of them in a manner that cannot but generate a rampant disposable culture.”
The False Paradigm of the “Quality of Life”
He questioned (9) the “paradigm” of the so-called “quality of life”: “More disquieting yet is the lightness with which the paradigm of quality of life is accepted, namely, that cultural model that inclines to recognize the non-dignity of certain human existences, completely identified and confused with the pathology of which they are bearers or with the sufferings with which they are accompanied.”
Finally, Cardinal Sgreccia lamented (10) a drift toward a trivialized euthanasia: “In the transparency of schizophrenic positions implied by these new cultural paradigms, one can perceive the ambivalence of those that, in demanding the freedom of total and indiscriminate access to euthanasia – basing it on the exclusive predominance of individual autonomy — deny at the same time this decisional autonomy in other cases, as the one of which we speak, where it is considered that only the doctors have the legitimacy to decide, without any involvement of the parents.”
Readiness of the Vatican’s Hospital
We recall likewise that on Monday, July 3, the President of the Bambino Gesu (Infant Jesus) pediatric hospital, a dependency of the Vatican, Mrs Mariella Enoc, said she was ready to receive Charlie Gard in Rome if his parents so wished and if his state permitted it.
In a press release on Monday, July 3, 2017, she quoted in Italian Pope Francis’ Tweet, posted on his account @Pontifex_it on June 30: “Defend human life, especially when it is wounded by sickness, is a commitment of love that God entrusts to every man.”
“The Holy Father’s words, in reference to little Charlie, summarize well the mission of the Bambino Gesu hospital. That is why I asked the Health Director to verify with London’s Great Ormond Street Children’s Hospital, where the new-born is hospitalized, and if the health conditions exist for Charlie’s eventual transfer to our hospital. We know that the case is desperate and that, apparently, effective therapies do not exist.”
Pope Francis’ Closeness
Mrs Enoc expressed her closeness to the parents, saying: “We are close to the parents through prayer and if it is their wish, we are ready to receive their child at our hospital for the time that remains to him to live.”
Pope Francis addressed a message to Charlie Gard’s parents on Sunday evening, July 2, expressing his closeness, through his spokesman, Greg Burke: “The Holy Father follows with affection and emotion the affair of little Charlie Gard and he expresses his closeness to his parents.” Pope Francis, he said, “prays for them and hopes that their desire to accompany and care for their child to the end is not disregarded.”
On June 27, the European Court of Human Rights rejected the request to take the child to the United States for experimental treatment and the British High Court pronounced itself in favor of halting the respiratory, hydration and feeding assistance.
Mrs Mariella Enoc, President of Rome’s Bambino Gesu hospital, who had expressed her readiness to receive the baby, if his transfer was possible and if his parents so wished, announced on Tuesday, July 4 that the transfer would not be possible for “legal” reasons: it is in any case the answer of the English hospital where Charlie is at present, reported Vatican Radio. Mrs Enoc said she was contacted by the baby’s mother to discuss his care.
In regard to surmounting the legal reasons, the Cardinal Secretary of State Pietro Parolin assured : “If we can do so, we will,” reported the same source.
[Article Translated from French]
by Constance Roques with Anita Bourdin