Charlie Gard and the Usurpation of the Family

July 8, 2017

As of this writing, the Great Ormond Street Hospital in London is reconsidering its decision to turn off the life support of 11-month-old Charlie Gard [1], and will seek a court order “to decide whether it is in the baby’s interests to be given an experimental drug.” [2] Charlie “has a rare and debilitating genetic condition that has no cure, and the hospital had” previously “said that letting him die was the only humane option to end his potential pain and suffering.” The hospital had “won a series of court rulings, most recently last week, authorizing it to withdraw life support.”

Now the Catechism tells us that those “whose lives are diminished or weakened deserve special respect,” and that sick “or handicapped persons should be helped to lead lives as normal as possible.” (Sec. 2276) [3] It is also true that euthanasia, “an act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator.” (Sec. 2277)

But that doesn’t mean that futile acts that will have no effect but to prolong suffering are required. On the contrary, discontinuing “medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘over-zealous’ treatment.” (Sec. 2278) In such a case “one does not will to cause death; one’s inability to impede it is merely accepted.” (Sec. 2278)

Still, the decision should be made by the proper people. Such “decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.” (Sec. 2278)

So let us assume that doing anything further for Charlie would constitute overzealous treatment, and that withdrawing his life support could in no sense be considered as euthanasia. Let us further assume, as appears to be the case, that nothing unlawful has been done. There remains another consideration that makes this situation problematic.

Charlie’s parents had wanted to take him to the United States for the experimental treatment that is now being reconsidered, and had raised substantial sums in a fundraising effort for that purpose. [4] But the courts denied them that opportunity. That courts anywhere would have the authority to deny parents the right to seek a plausible, though experimental, medical treatment to save the life of their child cannot be defended. As the Catechism tells us, “Following the principle of subsidiarity, larger communities should take care not to usurp the family’s prerogatives or interfere in its life.” (Sec. 2209) [5] It is difficult to conceive of a more unwarranted usurpation of family prerogative than to deny parents the right to seek medical treatment for their children.

It doesn’t matter if others with more governmental authority would make a different decision for their own children (if, indeed, they really would). It doesn’t matter if more illustrious personages think that the best thing to do is abandon further efforts to save the infant’s life. It’s not their call. It’s the call of the child’s parents, and this is a prerogative that must be respected, but was not in this case.

And it is precisely this sort of thing that causes people to be wary of governmental solutions to social problems. It is decidedly the business of government to see to it that all citizens receive the healthcare that they need. [6] But, in doing so, it must always respect the principle of subsidiarity, and not try to do such things as usurp the parental role.

We need universal healthcare in the United States. But the travails of Charlie Gard’s parents warn us that we should be cautious about how much power we give government in this area. Some will say we have by this incident been given ample reason to abandon the goal of universal healthcare. But we can do better than simply give up on the idea, and we should. It is not impossible to limit the power of government, even if we get it to serve human need. Infants like Charlie deserve no less.

Jack Quirk