“Why the Pope is Fighting for Charlie Gard”

The author is a Professor of Law at Notre Dame. I believe most people have by now at least heard about the situation with the baby in England.

Once again, Pope Francis is offering a powerful, profound and much-needed lesson to the entire world about how to love unconditionally our brothers and sisters on the peripheries and the grave perils of what he calls a “throwaway culture” that casts aside the weak and defenseless.

Neither the Pope nor the Catholic Church simply insist upon life-sustaining measures, regardless of a patient’s condition or circumstance. To the contrary, in Charlie Gard’s case, the Pope’s concerns are far more nuanced and complex, grounded in Catholic social teachings on medicine, what we owe to the sick and suffering, and how to care rightly for those with disabilities.

Once again, Pope Francis is offering a powerful, profound and much-needed lesson to the entire world about how to love unconditionally our brothers and sisters on the peripheries and the grave perils of what he calls a “throwaway culture” that casts aside the weak and defenseless.

Catholicism embraces the premise that everyone is intrinsically valuable, irreplaceable and possessed of inalienable dignity, regardless of condition, circumstance or the judgment of others. Of particular relevance here, those who are severely and permanently cognitively disabled are still entitled to equal moral concern, care and protection of the law.

Regarding medical care, the Catholic Church has consistently affirmed that the proper goal of medicine is to comfort and provide for the patient in the condition in which her caregivers find her — as she is, not as anyone would wish her to be. Doctors (and people of faith) should aim to preserve the life of the patient, and should never act or withhold action with the purpose of hastening death.

That said, not all medical interventions are obligatory. If medical treatments are unduly burdensome or futile, even if their termination or refusal may foreseeably hasten death, the church deems them optional.

These concepts are enormously complex and require much reflection and analysis, but it is clear that “futility” refers here to whether the treatment will sustain the life of the patient. An intervention is not “futile” simply because it fails to reverse or cure the underlying illness or because it will not restore the patient to “normal” functioning. A wide variety of interventions could also be described as “burdensome.” Pain is an obvious form of burden. There are assuredly others.

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It would seem that Pope Francis objects to the state usurping the role of the parents to determine their child’s best interests. They want to keep fighting for Charlie and appear not to regard his disability as a warrant to discontinue life-sustaining measures. Notice the disagreement between Charlie’s parents and Pope Francis’s conception of “futility” and “medical benefit” (based on Charlie’s current needs) versus that of the UK government (based on Charlie’s quality of life).

Pope Francis and Charlie’s parents seek to care for and comfort the patient the child now is, despite his perhaps permanently diminished state. Medical interventions that comfort or improve Charlie’s condition are seen as beneficial, even if they cannot restore his brain function to a preferred level.

By contrast, the UK government and the hospital do not recognize any measure as beneficial that fails to give Charlie their idealized standard of cognitive function. Since they seem convinced that nothing can restore such functioning, the only “beneficial” intervention is to terminate Charlie’s life-sustaining measures and for him to die.

Pope Francis believes, along with Charlie’s parents, that Charlie’s life — and all life — is worth fighting for, regardless of the presence of disability.

So long as there is a medical intervention available that is not unduly burdensome and will benefit the patient that Charlie is (not who we would wish him to be), we should do our best to see that Charlie and patients like him receive it. And, most importantly, we should always resist the temptation to terminate life-sustaining measures because of our judgment that the disabled patient’s life is no longer worth living.