Charlie Gard, a London baby with a genetic disease, has captured international concern and attention as his parents continue to fight for his life amidst obstructions imposed on them by the European Courts and the London hospital where he is currently imprisoned.
Charlie's parents want to take him to a hospital that will give him one last option. The hospital said no. Then the European courts said no. As I write this, the courts have decided to hear the case again to decide what is in Charlie's best interests, despite the fact that Charlie's parents have already decided what they want to do. But, unbelievably, they have no say. Charlie has a terminal disease, and his doctors have decided that there is nothing more to be done. Charlie is going to die. Even then, they cruelly refused the parent's request to at least let him die at home.
Meanwhile, doctors on both sides of the ocean have offered to give him assistance with an experimental treatment that might help him, even if temporarily. Here in New York, the New York Presbyterian Hospital and Columbia University Irving Medical Center made it clear Thursday night that they are willing to help. The New York hospitals have agreed to admit Charlie, or to send special medicines to the hospital where he is and give doctors guidance and instructions for administering experimental treatment. The Vatican also has offered to take Charlie.
If medical experts here in the USA are saying they will help and experts in Italy are saying the same thing, what is there to debate? Yet the U.K. has decided on Charlie's behalf, over his parents' objections. Thanks, but no thanks.
This is a no-brainer. There is no logical reason to deny these parents that right. Why, in God's name, would we not want to do this? There is a dangerous philosophy rearing its ugly head here. The idea that a court has the power to decide what is "in the best interests" of any patient of any age and gets to call the shots on whether he or she gets treatment or gets disconnected from life support and thus euthanized is grossly wrong.
If the discussion is about what is in Gard's best interest from a medical perspective, then it must be acknowledged that there is a difference of medical opinions regarding Charlie. Those British doctors who want to take him off life support cannot say theirs is the only valid opinion. One medical opinion cannot be the ultimate authority nor have the last word in a dispute, especially in a matter of life and death.
In this bizarre abuse of power, both the hospital and courts have forgotten basic ethics. In any doctor-patient relationship, it is the patient who is in charge. He is the one paying for a service and making the ultimate decisions about his care. It is the patient who has the responsibility of being forthcoming about symptoms and to ask questions if he expects an accurate diagnosis. The doctor has the responsibility to disclose the diagnosis if she has one and to suggest a course of action. When a patient has been informed, only then can he agree (or not) to accept the doctor's help and follow her advice. A doctor cannot lay a finger on a patient without consent. Otherwise, it would be battery.
Therefore, in the case of baby Charlie, who cannot speak, it's obviously the parents who are in the driver's seat. The doctor is in the service of the patient and his family, not the other way around. This case has turned everything upside down and inside out. Since when does the "almighty court" rule what is in somebody's best interest and circumvent even a patient's right to have a say in his own life? Both morally and legally, this is a sick and dangerous philosophy.
If we don't stop it in its tracks right now, it will take over our governments, too. It's probable that the "best interests" of medical institutions or governments are really their own. They might be interested in saving money by not having to provide extended care for somebody in a precarious situation. But saving money cannot be the overriding concern, trampling down rights of patients or their families.
There was a similar case of government overreach in 2011 with the case of baby Joseph from Canada. He was a baby with a degenerative disease whose parents were asking for a simple tracheotomy for their son. The Canadian hospital would not do it, despite the wishes of parents. Our organization, Priests for Life, was able to find a hospital in St. Louis willing to receive the child and do the tracheotomy and, if nothing further could be done, let parents take Joseph home for the rest of his days. Oddly, the hospital in Canada said no. We pressured the hospital in Canada; we called upon our supporters all over the world to raise their voices and to pressure that hospital to release the child to his parents.
It worked. One night they called me and told me to pick up Joseph and his father. I got the child in middle of the night in a medical jet and flew from Canada into St. Louis. Joseph was able to get his tracheotomy, and he lived with his loving parents at home for another six months.
That is how it should be. Neither set of parents demanded or is demanding a miracle. They are just demanding a right to be who they are: loving parents.
People sometimes call these situations "complex." But the most complex thing is figuring out how or why anybody can deny Charlie the loving care that's available.
First and foremost, he has the right to be home with mom and dad. Secondly, it is their call whether or not they choose experimental treatment for Charlie. It is not the place of the hospitals or of the courts to decide that. The government must never override the rights of patients, and the doctors must never be lord and master over patients. It is not ours to decide whether life will be short or long; it is only ours to love, for however long life lasts.
Father Frank Pavone is the national director of Priests for Life.
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