Charlie Gard is an English boy deeply loved by his mother and father. He also seems to be awakening a sleeping giant: the conscience of the Western world, waiting and watching to see if he dies, and, asking why.

Charlie was born last August with a rare and disabling disease that induces seizures and causes him great difficulty breathing on his own. He may have suffered injuries to his brain. For the last ten months Charlie has been living in a London hospital. His parents have never left his side.

In March, his doctors told his parents they should remove his ventilator, an act which would actively kill their child. His Mom and Dad refused, as any loving parents would do.

They want their little boy to receive a promising new treatment available in the United States, one that could possibly repair his genetic malfunction. They want Charlie to LIVE!!!

 The Failure of the Courts

But England’s courts and the European appeals system have decided three doctors at the hospital know better. They are denying Charlie’s parents the right to continue to care for him.

Their decision is based on a dangerous doctrine called “proxy consent,” which allows patients considered terminally ill to be disposed of by medical personnel. Thus these judges, along with three doctors, have denied his parents the right to take their little boy to the United States for care, or to take him home to die naturally.

It isn’t a matter of money. Charlie will cost the state nothing: Funds to care for him have been raised in a major campaign online. Pope Francis has reached out, offering a Vatican hospital to care for him. President Trump has also offered assistance.

God bless them both. Maybe it will bring them together.  Their response offers hope. They should work together for Charlie. 

 Judicial Power Abuse

But the answer so far is no, for the English and European Courts have determined that Charlie’s life has no value. Yes, I said it. They want to put this baby boy to death. 

It reminds me of another tragic situation from 2008, the Terry Schiavo case. The courts awarded the right of proxy consent to one member of her family, over the valid and impassioned objection of another family member. She was denied food and water, and died. The courts’ stated reason for the decision was the closeness of family relation, but many, myself included, have wondered whether it was really about one judge’s position on end of life issues.

Now we’re seeing another serious abuse of raw judicial power. The courts have set aside Charlie’s parents’ rights to care for him, and they have rejected the possibility of better care for him in the United States.

The Danger of Proxy Consent 

Health care providers encourage proxy consent set up in carefully drafted documents such as Durable Powers of Attorney for Health Care, Medical Proxy Declarations and Advance Medical Directives. Many are helpful. Too often, though, these end-of-life documents define medical nutrition and hydration as extraordinary medical care. In other words, it’s okay to stop giving food and water to the disabled. Judges will not intervene.

Medical professionals often pressure family members to withdraw nutrition and fluids, resulting in their loved ones’ death. In this case, though, the family has been cut out. The state has rejected his mother’s and father’s natural right to care for their son, and given Charlie’s doctors the authority to kill him.

Learning from the Past

Prompted by the Schiavo case, the Pontifical Academy for Life and the World Federation of Catholic Medical Associations issued a joint statement which addresses the misuse of proxy consent. It includes the following caution:

“We acknowledge that the dignity of every person can also be expressed in the practice of autonomous choices; however, personal autonomy can never justify decisions or actions against one’s own life or that of others:  in fact, the exercise of freedom is impossible outside of life.”

This concept of “proxy consent,” though routinely accepted in most circles, is based on a view of personal freedom of choice which too often stands at odds with the truth of the good of all human life, and what we owe one another as human beings. 

It should be dropped as a sole basis for making beginning or end of life decisions. In the case of little Charlie Gard, the state should defer to his parents. Children are not state property.

Disabled children should be loved and cared for, not killed. That includes Charlie. Save Charlie!