Charlie Gard: new horizons?

| July 12, 2017

 

 

On the 27th of June, the European Court of Human Rights endorsed the UK courts decision in the Charlie Gard case. This judgment allowed UK doctors to withdraw Charlie Gard’s life support despite his parents’ opposition. In the past weeks, his story has reached international ears. Due to international awareness and outrage, Charlie is still alive, and a new UK court hearing is expected to take place this Thursday.

 

With the intervention of Pope Francis, President Donald Trump, and many outspoken individuals and groups, the story of Charlie Gard, the eleven-month old baby affected by a rare mitochondrial disease, has reached well beyond the UK border. Both leaders have expressed their support for little Charlie and their willingness to do something tangible for him. Pope Francis has offered to host Charlie and his family at the Vatican Hospital (Bambino Gesu’) in Rome, while the US President tweeted on the third of July that he would be delighted to help Charlie and his family. He also discussed this issue with the UK Prime Minister during the G20 in Hamburg. Furthermore, U.S. Congressman Brad Wenstrup recently proposed a legislation to grant lawful permanent status in the US to Charlie Gard and his family.

 

Meanwhile, the New York-Presbyterian Hospital/Columbia University Irving Medical Center expressed the willingness to admit Charlie. The U.S. hospital also offered to ship an experimental drug to London’s Great Ormond Street Hospital, where Charlie is being treated.

 

Researchers at the New York-Presbyterian Hospital/Columbia University and at Bambino Gesu’ shared new evidence about experimental therapy for Charlie’s condition. They submitted two medical protocols to the London Hospital.  Such experimental treatments are alleged to offer a ten percent chance of success.

 

Following this, the Great Ormond Hospital asked England’s High Court to rehear Charlie’s case. Although their view on the issue has not changed from believing that Charlie’s best interest is a “dignified death”, they are seeking the High Court’s view in light of this new medical evidence.

 

During a preliminary hearing on the 10th of July, Mr. Justice Francis highlighted that the Court is seeking for fresh evidence. Charlie’s parents have been given forty-eight hours to produce new evidence, illustrating how such experimental treatment could improve the condition of their son.

 

However, a question might be asked. Even in the worst-case scenario, where these experimental treatments are not considered to be “fresh evidence” (i.e. a valid cure for little Charlie) does this justify the withdrawal of life- sustaining treatments? In other words, does the absence of a cure constitute a valid justification for Charlie’s death? What about cancer-patients whose chemotherapy is not meant necessarily to cure their illnesses, but to prolong their lives? Does this mean that we should consider a withdrawal of their cure for a “dignified death”?

 

Maybe Charlie’s best interest is when his parents have the right to hold his hands until his natural death comes.