The American specialist finally allowed by the courts — after four months of cruel obstinacy — to examine Charlie Gard apparently concluded that the baby is now beyond his help.
As a result, Chris and Connie, Charlie’s loving parents, have decided to call off their legal efforts to force the hospital maintain their son’s life support. Charlie will soon die.
None of the added hell Chris and Connie experienced over the last several months was necessary or warranted. As their difficult decision today indicates, they would have made the proper call if allowed to run the options string to its conclusion — as should gave been their right.
Now, the “what if” question will always hang over this case.
Charlie’s condition was degenerating. He is in worse shape now than he was four months ago. Had Chris and Connie been allowed to take their son to the specialist in the U.S. when they first wanted, he might have then been found eligible for the experimental medical Hail Mary pass they hoped to attain for him.
If not, at least Chris and Connie would have had the cold comfort of knowing they and medicine had done everything possible to save their sick little boy.
The hard obstinacy of doctors and courts refusing to allow parents to try experimental care for their baby has both sown distrust and raised fears that utilitarian bioethics will readily abandon the sickest and most vulnerable among us on the altar of “quality of life” and/or cost containment. That is not paranoia.
As I have written, the question of stopping Charlie’s life support was a value judgment, not a medical determination. The doctors didn’t insist on stopping treatment because it was not working, but because it was. Charlie was being kept alive as desired by his parents when the doctors believed it was better for the baby to die sooner rather than later.
U.K. law, it is true, gives ultimate decisional power in this kind of “futile care” dispute to doctors. That is an unfortunate consequence of a centrally controlled health-care system.
But make no mistake: We in the U.S. face a similar push to grant doctors and/or hospital bioethics committees the ultimate power to refuse wanted life-sustaining care.
We need not go down that road. Almost all families do the necessary thing in dire medical circumstances. Coercion leads to greater resistance and the suspicion that a patient is being abandoned.
That doesn’t benefit anyone. The watchword in such disputes should be “mediate,” not “dictate.”