The British government’s rejection of an offer by Vatican-run Bambino Gesu Children’s Hospital to treat 1-year-old Charlie Gard’s rare genetic condition is a heart-breaking example of why the bureaucratic nanny-state is a danger to human rights and the dignity of the elderly, infirm, and dying.
The European Court of Human Rights has declined to hear an appeal from the Supreme Court of the United Kingdom, which has refused to allow the parents of little Charlie to take him to Italy or the United States for experimental treatment. The courts laughably cite human rights concerns as the basis for their rulings. In the interim, a child remains without life-saving medical care that he could receive in another country, while his parents are enjoined from doing anything to help him. The European nanny-state has sentenced little Charlie to death.
The courts involved in this matter are not inherently cruel nor are they filled with diabolical jurists looking to snuff the life out of a defenseless baby. In all likelihood, they are decent, honorable public servants, driven by noble intentions and looking to do the highest good for the highest number. They are dutiful Benthamites, applying a cold calculus to human considerations.
Yet these judges and their bureaucratic counterparts fall far short in their ethical obligations because they have subordinated the dignity of human life to their own subjective understanding of personhood. It is true that little Charlie cannot breathe on his own, cry, or express himself, but he is still entitled to die with dignity, and his parents should be entitled to do anything they can to help him, even if treatment cannot ultimately save his life. Interference from the government to prevent Charlie’s desperate parents from seeking access to potentially advantageous procedures abroad, or to alleviate his pain, is an affront to this child’s suffering and an insult to his parents’ grief.
The ethical dimensions of the problems here are not uncomplicated (although the value of life is hardly debatable), but the British government’s meddling in what should be a private family matter is cause for substantial concern.
As the United States continues to ponder the benefits of a single-payer health care system, everyone in this country should take notice of the government’s role in determining Charlie Gard’s fate. The British government, along with the European courts, have addressed this case with sweeping arrogance. Charlie Gard’s prognosis is bleak, but the government should not have the power to decide the time and place of his passing when his parents are more than capable of making decisions on his behalf. The government even refuses to allow this little boy to go home to die in peace.
This raises an important issue: if the government is empowered to say who lives and who dies, along with when and how, it will have the power to determine when one life is valuable and another is not. When the state is empowered to kill in the name of humanity and to deny basic rights to those who deserve our highest protection, and when it can make life-or-death decisions in contravention to the judgement and religious beliefs of a family, the family as an institution can no longer be considered the basic building block of society. Under this paradigm, the government becomes all-encompassing, and, in fact, crushing. It no longer stands as a mediating institution for the preservation of order; rather, it becomes a patriarchal master who lords over us all.
The limits of government are usually discussed in the context of economic efficiency and the free markets, but it is impossible to speak of efficiency when discussing the intrinsic value of a human life. As Pope Francis said last week on Twitter, “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to us all.” We fail as human beings when we fail to defend the defenseless. Self-congratulatory accolades with respect to our construction of a “progressive” society are particularly troublesome considering our willingness to cast the defenseless and sick to the gutter, especially in the name of humanity.
When we fail to recognize the primacy of the family in matters of health, and allow the state to make private decisions on behalf of our loved ones, we acquiesce to the mechanistic role of bureaucracy to determine the value of everything around us, including our lives.
Is that the meaning of progress? It appears to be so.
Glen A. Sproviero is a commercial litigator in New York City. Read other columns by him here.
