SAN ANTONIO -- The sad case of the British infant Charlie Gard, who died late last July following a highly publicized legal battle regarding his care, may have significant and troubling ramifications for critical care clinicians moving forward, an expert said here.
The case, which , also highlights the need for all hospitals to have policies and procedures in place to define and respond to potentially inappropriate intervention requests from family members, said pediatric critical care physician Alexander Kon, MD, of the University of California San Diego.
Kon spoke Tuesday at a late-breaking session of the devoted to topics in ICU medicine that had been the subject of headlines during the previous year.
Charlie Gard was diagnosed with the extremely rare, fatal genetic disease encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) soon after his August 2016 birth.
Doctors who treated the child at Great Ormond Street Hospital in London went to court to have him removed from life support, arguing that further treatment would be futile and and would merely prolong the boy's suffering. But his parents wanted to pursue any and all measures to keep Charlie alive, including a highly experimental treatment known as nucleoside bypass therapy.
Kon said the west London's hospital's move to overrule the parents' wishes to continue treatment even though Michio Hirano, MD, the Columbia University physician who developed the experimental therapy, had agreed to treat him, was not in accordance with aregarding potentially inappropriate treatment developed by leading critical care groups, including SCCM and the European Society for Intensive Care Medicine (ESICM).
"In the Charlie Gard case the parents wanted life-prolonging treatment and they found a physician who thought that was reasonable and was willing to try, and both the London hospital and the British High Court said no," Kon told 51˶. (After several months, the hospital allowed Mirano to examine the boy; he determined that Charlie's condition had deteriorated too much by then for the treatment to possibly succeed, and the parents agreed to removal of life support.)
The 2015 joint policy statement stipulates that "conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a willing provider at another institution, and opportunity for external review of decisions."
Kon said in the case of Charlie Gard, the parents had found a willing provider, but the London hospital overruled them.
"It is not clear why the hospital did this," he said. "And what is even more unusual is that the courts stepped in and made a decision about the child's best interest that was in opposition to that of a prominent physician and the parents."
He noted that historically, the courts have tended to agree with the family or err on the side of life.
"The court said, 'We can decide what is in this child's best interest better than his doctors and parents'," Kon said. "This is troubling and potentially sets a dangerous precedent."
He added that while many hospitals have policies in place to deal with family requests for procedures that clinicians find potentially inappropriate, "the vast majority do not."
"This is a problem that didn't really exist 50 years ago, and we are seeing it more and more," he said.