Thursday, July 27, 2017

We Are All Charlie Gard

In medicine, less frequent than in politics or entertainment, there are cases which rage in the public imagination. Most often they are about end of life decisions, usually of a younger individual for whom the treatment options have run out and the decision to “pull the plug” is fought vehemently in the wards, the courts and the press.

It is rare, thank mercy, for such a case to involve a newborn. But the tragic situation that unfolds in London with Baby Charlie Gard is one of those rare and horrific occurrences. The child is dying, born with a syndrome that rapidly degrades DNA in the energy supplying portions of his cells. His family wished to pursue experimental therapy in the hopes of survival but the medical establishment and the courts would not allow them to do so.

It is easy to side with Charlie’s parents. I cannot imagine the horror that the young couple is living with, knowing that their little child is terminally ill without hope of rescue or cure.  Like everyone else, I pray for the miracle that will allow the small boy to survive while knowing that such a miracle does not exist.

But this is not a case where there are good guys and bad guys, despite how it is often portrayed in the inflammatory headlines of the press and social media. I wrote that it is easy to take the parent’s side, but that is tempered with the fact that the parent’s side is neither realistic nor necessarily kind. There is no cure for Charlie’s condition. Even if the therapy were to work the best hope would be stabilization. But no one, not even the expert in New York who offered treatment, can predict Charlie’s condition in the future or his prognosis. No one can estimate the cost and effort that will be required to keep him alive or what his quality of life might be. My heart cheers that his family has said they would do whatever it takes to keep him with them, but no one should have to face such an unimaginable and indefinite burden.

Nobody wants Charlie to die. There is a tendency for lay people to use terms like “The doctor gives him six weeks to live,” or “the doctor says he will never walk again,” as if the provider is condemning the patient to his doom. Perhaps doctors are at fault because we explain prognosis in such a detached manner that it is easy for us to seem remote or callous. But doctors don’t choose the outcome. We merely predict and facilitate. No one, beyond the family itself of course, would be happier if Charlie were to survive and thrive than the doctors at Great Ormond Hospital who had to make the decision to remove care.

But there is a side that is not represented in the discussion, and that is Charlie’s. The parents should have the right to make decisions for their child but those decisions should be based on what might be best for him and what the best medical information reveals about his disease course. It cannot be enough to say they want to keep him alive and will love him through whatever life gives him. Charlie, were he to survive, would have no ability to report pain or hunger or thirst. He would have limited independent movement. He would probably never develop speech. If he could see, he would be unable to interpret images beyond the flashing of lights. And he would most likely die at a very young age.

Charlie’s parents have been put in an impossible position. The ethics committees, the doctors and the courts have provided a support for them to make the unimaginable choice, to allow their child to pass away. They, and all of us who are engaged by this case, must look at all the resources and think what is best for the small and voiceless soul that is Charlie's.