Notes wish that parents’ “desire to accompany and care for their own child to the end” would be respectedPope Francis today weighed in on the case of Charlie Gard, saying through Vatican spokesman Greg Burke that he is following the situation of the 10-month-old baby in London, and assuring his “closeness to his parents.” He also assured his prayers, and expressed his wish that the parents’ “desire to accompany and care for their own child to the end” would be respected.
Charlie was born last August with an extremely rare, fatal condition called encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS. The boy has severe brain damage, is unable to breathe on his own, and experiences frequent seizures.
Charlie’s parents want the baby to be moved to the United States where he can receive an experimental treatment for the condition; they’ve raised close to $2M in order to make that possible.
The Great Ormond Street Hospital in London, where Charlie is a patient, has said since March that there is nothing further they can do for the child and has requested that he be taken off life support. The hospital, in accordance with British law, applied to the courts to forestall further treatment.
On Tuesday, the European Court of Human Rights turned down the family’s final appeal, clearing the way for the hospital to remove life support.
Charlie’s parents said in a YouTube video on June 29 that they have been denied their request to take him home to die.
Moral debate
Gard’s case has caused moral and political debate in the UK and throughout the world.
On the one hand is the question of what is in the best interests of Charlie. Commentators have noted that his parents certainly have no obligation to continue treatment, which from a moral standpoint could be considered at this point “extraordinary,” or even “disproportionate.”
However, of greater concern to many ethicists is the role taken in Charlie’s case by the state, with a court having overruled the parents’ wishes to seek further treatment.
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On Friday, the Pope tweeted: “To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
Burke retweeted the statement on Saturday, adding #CharlieGard.
Already on Wednesday, the Vatican’s Pontifical Academy for Life issued a statement.
It said, in part, that “the wishes of parents must [be] heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”
The Academy noted: “If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.
“Dear Charlie, dear parents Chris Gard and Connie Yates, we are praying for you and with you.”
According to Crux, the treatment Gard’s parents want for him is being administered in the United States to Arturito Estopinian, a 6-year-old who was “sent home to die” when he was 18 months old, but receives daily doses of the therapy.
The BBC reported that Tuesday’s court decision showed agreement with hospital specialists that Charlie has no chance of survival. Further treatment would “continue to cause Charlie significant harm,” the court declared.
The Pontifical Academy for Life statement noted a crucial question: “The proper question to be raised in this and in any other unfortunately similar case is this: What are the best interests of the patient?”
“We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family,” the Academy statement said.
The Catholic Bishops Conference of England and Wales, in its own statement, said, “Sadly, prolonged terminal illness is part of the human condition. We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration so that death might be achieved. We do, sometimes, however, have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”
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The Pope’s statement today, issued in Italian:
“The Holy Father is following with affection and emotion the situation of Charlie Gard, and expresses his closeness to the parents. He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”
