What is the Charlie Gard controversy?

The case of Charlie Gard, a terminally ill infant in England, has raised questions around the world about whether the state has the right to block parental rights in order to prevent further suffering of a child.

Charlie’s parents sought to take him to either the United States or Italy for an experimental treatment, but several European courts have blocked their decision and sided with doctors who say that switching to palliative end-of-life care is in the best interest of the child.

On Monday, a British judge agreed to consider new evidence in the case to determine whether the child should be allowed to undergo the experimental treatment.

Who is Charlie Gard?

Charlie Gard is an 11-month-old British infant who, a month after he was born, was diagnosed with mitochondrial DNA depletion syndrome (MDDS), a genetic disease so rare it’s believed to have been diagnosed in only 16 children in the world. The condition causes brain damage and a progressive weakening of the muscles.

According to the hospital treating the infant, Charlie’s brain, muscles, and ability to breathe are all severely affected by the disease. In addition, he has congenital deafness and a severe epilepsy disorder. His heart, liver, and kidneys are also affected, but not severely. The hospital notes Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided. No one can be certain whether or not Charlie feels pain. 

One of the world’s leading experts with a special interest in mitochondrial diseases has concluded Charlie has the most severe form of infantile onset RRM2B deficiency.

Charlie’s parents are Chris and Connie of Bedfont in West London.

Why isn’t the court allowing Charlie’s parents to make the decision about their child’s treatment?

The court and Charlie’s parents disagree about what is in the best interest of the child.

While parents are presumed to have the authority to make decisions about their children’s medical treatment, that parental right is not considered absolute. According to the British Medical Association, when there is a disagreement about the best interest of the child, the UK courts must weigh the evidence and determine what should be done:

The moral authority behind parental responsibility depends in large part on the entirely reasonable supposition that parents will act in the best interests of their children. If it appears, however, that parents are following a course of action which is contrary to their child’s interests, their decisions can be challenged. Where doctors believe that parental decisions are not in the best interests of the child, it may be necessary to seek a view from the courts, whilst meanwhile providing only emergency treatment that is essential to preserve life or prevent serious deterioration. When asked to decide about treatment, the courts recognise their duty to protect children and have almost invariably said that serious treatment should be given against the wishes of parents where there is a good chance of it succeeding or providing significant benefit to the child. The courts are required, in their decision making, to have regard to the rights given force by the Human Rights Act, and to have the child’s welfare as the paramount consideration.

At a hearing of the Family Division of the High Court in April, the judge ruled it was in “Charlie’s best interests for artificial ventilation to be withdrawn,” for the child’s treating clinicians to “provide him with palliative care only,” and for the infant “not to undergo nucleoside therapy.”

“Some people may ask why the court has any function in this process; why can the parents not make this decision on their own?” Justice Francis said in his ruling. “The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests. The Great Ormond Street Hospital (GOSH) has made an application and it is my duty to rule on it, given that the parents and the hospital cannot agree on the best way forward.”

The parents appealed to both the UK Supreme Court and the European Court of Human Rights, both of which declined to overturn the decision. Life support for Charlie was originally scheduled to be withdrawn on June 30, but his parents were given more time to say goodbye to their son. During this period, the parents filed an appeal that the court is now considering.

What is the legal basis for the decision?

In making his original ruling, Justice Francis cited the 2005 case of Wyatt v Portsmouth NHS Trust, which he described as “the ‘intellectual milestones’ for a judge making a decision of the kind with which I am faced today.”

In the Wyatt case, British courts ruled that a seriously ill baby named Charlotte should not be resuscitated if she stops breathing, since the resulting deterioration caused by the treatment would make daily life for her intolerable.

“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult,” said Justice Francis, applying the Wyatt precedent. “The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues.”

What is the treatment Charlie’s parents are seeking?

Charlie’s parents want to have him undergo nucleoside therapy treatment.

As GOSH notes, “Nucleoside therapy has been referred to as ‘pioneering treatment.’ In fact, this type of treatment has not even reached the experimental stage on mice, let alone been tried on humans with this particular strain of MDDS.”

A U.S. doctor offered earlier this year to try using nucleoside therapy, despite it having never been tested. At the time, GOSH applied for ethical permission to attempt nucleoside therapy on Charlie, but by the time that decision was made, Charlie’s condition had greatly worsened and the view was that “his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.”

Could the experimental procedure cure Charlie?

As almost everyone admits, the chances of Charlie’s condition being improved by treatment are extremely unlikely.

Doctors in both the UK and Spain examined Charlie and concluded that his condition is irreversible and that ventilation should be removed to prevent him from further suffering. As the court determined, the experimental treatment is “potentially painful but incapable of achieving anything positive for him.” The doctor in the United States who had offered the treatment reviewed Charlie’s condition and said:

Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encelopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.

However, the doctor added: “Were Charlie in the U.S., we would treat him if the parents so desired and could pay for it.”

The judge determined that while medical science may benefit from experimentation on the infant, “experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”

If the experimental procedure is unlikely to work, why are his parents seeking the treatment?

Charlie’s parents dispute that their son has irreversible brain damage. On Monday Mrs. Yates said on BBC 4’s Today show that her son is responsive, enjoying tickles, and watching videos with his parents.  

On July 6, seven “clinicians and mitochondrial disease researchers” at the Vatican-owned Bambino Gesù hospital sent a letter to GOSH saying the nucleoside therapy treatment had shown “dramatic clinical improvements” in mice and other patients with a similar genetic condition. The lawyer for Charlie’s parents told the UK court on Monday that an American doctor has suggested that, at a “conservative estimate,” the experimental treatment has a 10 percent chance of working for Charlie.

What is the primary ethical issues of this case?

The doctors involved in the case believe Charlie’s condition is irreversible and that the current treatments (e.g., ventilation, suction) are capable of causing him pain. Charlie’s parents agree that if their son’s brain function cannot be improved, that he should not be subjected to further life-sustaining treatment. But they dispute that he has irreversible brain damage.

Because of this agreement, the main ethical issue is about the scope of parental rights and who should be allowed to decide what is in the “best interests” of the child in regard to additional treatment.

The parents believe it’s in their child’s best interest to undergo nucleoside therapy, even if it could add to or prolong suffering, because of the admittedly remote possibility it will improve Charlie’s condition. The British government, however, contends that in order to prevent further suffering, it has a duty to intervene and supersede the desires and rights of the parents.

What is the current status of the case?

On Monday, the UK court gave Charlie’s parents 48 hours to produce new evidence illustrating how experimental treatment could improve the condition of their son.

According to The Guardian, Justice Francis said he would be “delighted” to be able to change his mind from his April decision not to allow the baby to be flown to the United States, but it would take “drastic” new evidence for him to do so.

“I have to decide this case not on the basis of tweets, not on the basis of what might be said in the press, or to the press,” Francis said, acknowledging the huge public interest surrounding it.

The judge added, “I don’t think there’s anyone involved who wouldn’t want to save Charlie. . . . I am at one with the 350,000 [who signed the petition supporting Charlie’s parents].” 

Judge Francis said he’ll hear the evidence on Thursday and may or may not be able to resolve the matter then.