Charlie Gard: Who decides when there are no right answers?

It goes against my bleeding-heart liberal tendencies to praise an article by a well-known conservative commentator like Charles Krauthammer, but the issues he writes about in this instance rise above the usual party politics and left-right positions on medical care and morality. Krauthammer’s background and life experiences give him unusual insight into the dilemma facing the family of the infant Charlie Gard whose parents are fighting a London hospital to release him so that he can undergo experimental medical treatment that may or may not save his life.

Charles Krauthammer graduated from Harvard medical school in 1975 and became a psychiatrist before taking up a career as a columnist and TV commentator. He is also physically disabled from a diving accident that occurred during his first year of medical school.

In his Washington Post opinion column, “What to do for little Charlie Gard”, 7/20/17, Krauthammer summarizes the case of the eleven-month old infant:

“One cannot imagine a more wrenching moral dilemma than the case of little Charlie Gard. He is a beautiful 11-month-old boy with an incurable genetic disease. It depletes his cells’ energy-producing structures (the mitochondria), thereby progressively ravaging his organs. He cannot hear, he cannot see, he can barely open his eyes. He cannot swallow, he cannot move, he cannot breathe on his own. He suffers from severe epilepsy, and his brain is seriously damaged. Doctors aren’t even sure whether he can feel pain.

“For months he’s been at the Great Ormond Street Hospital in London. His doctors have recommended removing him from life support.

“His parents are deeply opposed. They have repeatedly petitioned the courts to allow them to take Charlie for experimental treatment in the United States.”

The issue here is that under British law, when doctors and parents disagree on treatment for a child in such dire circumstances, the court becomes the arbiter of the best interests of the child and may overrule the parents right to make medical decisions. In this case there are no accusations that the parents are incapable of making such decisions or that they have in any way mistreated or neglected their infant son. The parents have raised funds and others have agreed to provide treatment for free if it has any chance of helping the child, so the cost of treating Charlie is not an issue.

Krauthammer concludes that the parents are wrong and the doctors and judges are right, but “despite all these considerations, I would nevertheless let the parents take their boy where they wish.” I agree with almost all of what he says, except for this: “Charlie’s suffering is literally unimaginable and we are simply prolonging it.” Because it is “unimaginable”, the parents are in the best position to determine whether the child is suffering and to what extent.

My son Danny, who is 40 years old and has profound physical and cognitive disabilities, is obviously not in the same situation as Charlie Gard except in the respect that Danny has no way of communicating specifically about his condition and what he is experiencing. As his parents, my husband and I know how he looks when he is unhappy, uncomfortable, or in pain. Sometimes we are wrong, but mostly we know better than anyone else.

In recent months, Danny has had many trips to the emergency room for seizures and two hospitalizations for pneumonia. I can say without a doubt that he has never been more miserable than when he was in the ER having trouble breathing with a temperature of 103 degrees and waiting for the diagnosis of pneumonia so that he could start on antibiotics that would relieve his misery over the course of the next day. As for his seizures, his normal (for him) movements are often mistaken as seizure activity by the experts when he is just expressing his exuberance for something he finds highly entertaining, such as the beeping of alarms going off in the ER. He also sometimes appears to be grimacing in a way that most people would interpret as pain, when we know he is expressing extreme happiness and amusement. We don’t want Danny to suffer, but sometimes suffering is more in the eyes of the beholder who cannot fathom what it is like to be Danny and assumes that suffering is part of his condition when it is not.

Krauthammer acknowledges the exceptions for when parental decisions should be overruled as well as the ulterior motives of the state, when it gives priority to cost savings over the welfare of an individual child. He is also skeptical of miracle cures. Nevertheless, he says, “...there’s a reason why, despite these exceptions, all societies grant parents sovereignty over their children until they reach maturity. Parents are simply more likely than anyone else to act in the best interest of the child.”

A final ruling on the case of Charlie Gard is expected on July 25th, 2017.

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Here is another Washington Post article on the Charlie Gard case,“The dying child who became an ideological football” by Ruth Marcus, 7/6/17:

“…as tends to happen in these circumstances, individual tragedy is susceptible to being hijacked in service of a larger, sometimes misleading point. So the terrible case of Charlie Gard serves both to raise difficult and important questions about the proper contours of parental rights — and to sound unwarranted alarms about the horrors of socialized medicine and the insidious arrival of death panels. Charlie is at once a dying child and an ideological football.”

...and another Washington Post article, "Who gets to decide if Charlie Gard's life is worth living? It shouldn't be his doctors" by Charles Camosy, 7/13/17:

"...The values of the parents should be the ones used when making the decision, especially when they do not require the use of shared community resources. There is no basis for arbitrarily substituting the moral judgment of a physician — and plenty of reasons not to."

A Supreme Court unanimous decision on IDEA

Fire Power

Below is a news item from ACCSES, a national disability provider organization. On 3/22/17, the U.S. Supreme Court overturned a 10th Circuit Court decision on IDEA, the Individuals with Disabilities Education Act. They ruled in favor of parents who sent their child to a private school after the school district failed to provide a Free and Appropriate Public Education (FAPE), to their child. 

Neil Gorsuch, who has been nominated to the Supreme Court by President Trump, was part of the lower court decision against the parents. 

According to an article in the Los Angeles Times from 3/22/2017: 

"Asked about the issue on Wednesday, Gorsuch said he was a part of a unanimous three-judge panel that had sought to follow a Supreme Court standard set in 1982.

"Several liberal groups described the court's decision as a direct rebuke of Gorsuch.

"However, Senate Judiciary Committee Chairman Charles E. Grassley (R-Iowa) noted that Gorsuch was not part of the three-judge panel whose ruling was directly reversed in the court’s decision in Endrew F. vs. Douglas County"

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An ACCSES News Alert, 3/22/17, from Kate McSweeny, Vice President of Governmental Affairs & General Counsel:

Today, the United States Supreme Court handed down a unanimous decision in Endrew F. v. Douglas County School District, deciding that children with disabilities are entitled to an Individual Education Plan (IEP) that will provide challenging objectives appropriate for the individual. 

Many of you who came to ACCSES’s Summit in Savannah or attended ACCSES’s Education Policy Committee call earlier this month will recall that the underlying case was brought by the parents of a boy with autism, whose IEP had been virtually unchanged during the time he had spent in the school system from pre-school to the fourth grade. The parents moved Endrew to a private school that focuses on students with autism, where their son did much better. They also sued the local public school system for its failure to provide a “free appropriate public education” (FAPE) to their child as required under the Individuals with Disabilities Education Act (IDEA).

Endrew and his parents lost before an administrative law judge, a federal district court, and the United States Court of Appeals for the Tenth Circuit. The Tenth Circuit determined that a child’s IEP is adequate so long as it is calculated to confer “an educational benefit” that is “merely more than de minimis.” By applying this standard, the Tenth Circuit determined that Endrew’s IEP had been “reasonably calculated to enable him to make some progress”; therefore, he had not been denied a FAPE. The Supreme Court granted certiorari and heard oral arguments in the case in January.

In the decision handed down today, the Supreme Court disagreed, and vacated the Tenth Circuit decision. Rather than the low de minimis standard, the Supreme Court stated:

“To meet its substantive obligation under the IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” While the Court declined to establish a specific standard, it expressly stated that “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all. For children with disabilities, receiving instruction that aims so low would be tantamount to ‘sitting idly . . . awaiting the time when were old enough to drop out.’ The IDEA demands more.” (Citations omitted.)

You can read the decision at this link. It’s a good read.