Charlie Gard will likely die soon — let's learn from the battle

Ten month old Charlie Gard has drawn support from those seeking to alter Charlie’s fate, from the Pope to President Trump to the brother of Terri Schiavo to hundreds of thousands of hits by those offering money for his cure on his parents’ Facebook, Instagram and GofundMe pages.

The only questions about this poor little child’s fate are: Where will he die and why he will die?  

Born on August 4, 2016, Charlie, who is on life support in an ICU at the world renowned Great Ormond Street Hospital for Children in London, has an extremely rare genetic disease — mitochondrial DNA depletion syndrome.

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The disorder means that the tiny battery packs in his cells which supply energy to permit cellular growth and development are not working properly. As a result, Charlie has awful brain damage, seizures, paralysis, failing kidneys, cannot breathe on his own and many other problems.

 

Doctors at his hospital think his ongoing care is futile and cruel. They worry that Charlie could be suffering. They want to disconnect his ventilator and let him die. British courts, including the U.K. Supreme Court and the European Court of Human Rights agree.

The hospital planned to remove his life support on June 30. However, after Charlie’s parents vociferously objected, the doctors agreed to delay. On July 2, after the Vatican had sent out some confusing messages on the case, the Pope argued that the parents should be allowed to "treat their child until the end." and offered to bring Charlie to the Vatican’s Children’s’ hospital. On July 3, Donald TrumpDonald John TrumpIvanka Trump pens op-ed on kindergartners learning tech Bharara, Yates tamp down expectations Mueller will bring criminal charges Overnight Cybersecurity: Equifax security employee left after breach | Lawmakers float bill to reform warrantless surveillance | Intel leaders keeping collusion probe open MORE tweeted that "if we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."  

The parents have been told by an unidentified neurologist in the U.S. that there might be a treatment that has a small chance of helping Charlie. More recently a hospital in New York offered to accept and try an experimental drug on the boy or to ship the drug to London. They do not understand why the doctors won’t let them give Charlie every opportunity to live. 

The standoff is understandable. Parents who are told there is hope of treatment or cure will jump at the chance. Charlie’s parents have the money and the support of many powerful people to do so.

So why I am sure Charlie will die with the issue being where not if?

The damage Charlie has suffered is extensive and irreversible. Having participated in the oversight of many experimental drugs for the kind of disease he has, while there may be a chance of extending his life a tiny bit, there is no chance of curing him. At some point his organs will continue their deterioration and fail, experimentation or not.

Where a research doctor sees hope in slowing a disease a bit, objective assessment says completely untested last ditch drugs never cure and sometimes harm. The enthusiasm of someone who wants to try a ‘promising’ experiment is not born out in the first human subjects who receive it.

So the issue is where does Charlie die, not if. If efforts were made to move him outside the ICU experts tell me he is highly unlikely to survive so he might die on a plane to the Vatican, New York or in an ambulance in the U.K. He might die when the untested drug is given to him in the U.S. or in London. He might die when the doctors decide enough is enough or a bit later if they decide to honor his parents’ wishes to keep the technology going. But, no one will cure Charlie. No one will keep him alive for more than months.

So what can we learn from the battle over Charlie Gard?

First, in the U.K. and the U.S. there is no money to help families gain access to experimental drugs. Charlie’s parents raised more than a million and a half dollars by begging on the internet. That won’t work for future Charlie’s and other children whose parents want their kids to get life-saving health care.

Those such as President Trump who say they want to help Charlie should be telling us what they are budgeting to expand access to health care including both novel experimental interventions and proven treatments for all American kids. So should Congress. Anything less, including making offers to help Charlie Gard, is just empty, feel-good, cheap politician hot air.

Who ought to decide the fate of Charlie and future Charlies? In the U.S. we talk of the right of parents to decide. In the U.K. they don’t — they talk of parental responsibilities to their kids. In the U.Kk doctors views have as much or more weight than parents in hard cases. In the U.S. parents get more say but not always. When they are denying proven care — blood transfusions, insulin, antibiotics to their kids say for religious reasons — then, remember, doctors gain control.

It is important to keep in mind that courts have played a key role in the fight over when and how Charlie will die. That is very important. In bitter disputes court review is appropriate. Sometimes parental love can harm a child. Sometimes doctor's optimism can do so.

Sometimes the bill is not likely to be paid diminishing enthusiasm for continuing care. The courts have come down again and again on the side of not allowing Charlie to suffer. That is a good standard for anyone not old enough to tell us what they would want abd are in as dire straits as Charlie’s doctors believe him to be.

Lastly, is it ever acceptable to say there is no more hope? For doctors, yes. For parents, maybe not. No one should ever criticize Charlie’s parents or other desperate parents for what they want to do for their children. But that does not mean government, courts or doctors should always let them do it.

Arthur L. Caplan is the Drs. William F and Virginia Connolly Mitty Professor and founding head of the Division of Bioethics at New York University Langone Medical Center in New York City. He is the co-founder and Dean of Research of the NYU Sports and Society Program and the head of the ethics program in the Global Institute for Public Health at NYU.


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