Daniel Sokol: The Charlie Gard case—an ethicist in the courtroom

Daniel Sokol provides an ethicist’s point of view on the latest hearing in the case of Charlie Gard


daniel_sokol_2016Shame on you GOSH!” chanted the crowd outside the gates of the Royal Courts of Justice on Thursday, referring to the Great Ormond Street Hospital where 11-month-old Charlie Gard lies in intensive care.

In Court, the barrister for the parents presented their new evidence in an effort to allow Charlie to undergo experimental nucleoside treatment abroad.

The parents pinned their hopes on a respected American doctor, a professor of neurology, who gave evidence via video-link. He had also given evidence in the April hearing.

In the doctor’s opinion, which was based on his team’s recent, unpublished research not available in April, there is a 55% chance of the nucleoside therapy reducing the amount of time on a ventilator, and a 10% chance of complete weaning from the ventilator.  The doctor was less optimistic on the impact of the treatment on brain function, but said there was a “small but significant chance” of improvement.

The fundamental medical issue, according to the doctor, was whether the brain was merely dysfunctional or whether there was irreversible structural damage. According to the doctor, the MRI and EEG did not answer that question.

As the American doctor had not examined Charlie, the judge asked if he would be prepared to come to London.  He was.

The highlight of the parents’ case came late in the day, when their Counsel asked the doctor whether a clinical examination could resolve the dyfunction vs. structural damage question. No. “How then can we resolve this question?” asked the barrister, who surely knew the answer. “The only way to tell how much of the brain damage is irreversible is by trying the [nucleoside] therapy.”

A key difficulty with the American doctor’s evidence is that he has never examined Charlie, or seen his medical notes, or all the imaging. He relied on summaries, reports and e-mails.  He also said he would defer to the appropriate specialists in determining how much of Charlie’s encephalopathy is attributable to a dysfunction or a structural brain problem.

After hearing the evidence, the judge told the lawyers that the American doctor was not, at present, sufficiently informed about Charlie’s case to influence the court.

The outcome of the hearing is that a multi-disciplinary meeting will be held shortly, after which a decision will be made.  The details of that meeting, including the date, the attendees, the topics and the format, will be discussed on 14 July 2017.

Counsel for the family said that any experimental treatment provided by the American doctor would have to comply with the Hippocratic Oath.  However, it is not clear that the Oath would support the experimental treatment.  The Oath declares:

“Into as many houses as I may enter, I will go for the benefit of the ill”.

 The author of the Art, one of the Hippocratic essays, wrote: “I would define medicine as the complete removal of the distress of the sick, the alleviation of the more violent diseases.”[i]

The restoration of some muscular movement and some degree of cognitive improvement on what appears to be a severely encephalopathic brain is arguably of no benefit.  A greater degree of awareness and sentience could result in more, not less, distress, and more, not less, pain, whether physical or psychological. Cognitive improvement is no blessing if it falls short of the threshold of minimally acceptable cognitive function.  The American doctor could not comment on the degree of improvement, but the preponderance of the evidence—and the finding of the Court in April—is that the nucleoside therapy is highly unlikely to confer any benefit to Charlie’s massively damaged brain.

The hospital’s rationale is closer to the spirit of the Oath, as described in the hospital’s position statement for the hearing:

It has been and remains the unanimous view of all those caring for Charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare.  That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.”

If that is factually accurate, any aggressive care will not be “for the benefit of the ill” and will be contrary to the Oath.

An important factor in this case is Charlie’ current level of pain. Professor A, a leading expert in mitochondrial diseases, said in the April hearing that Charlie is likely to have the conscious experience of pain.  His treating clinicians believed in April that Charlie was suffering.  The American doctor said on Thursday that he saw no evidence of pain, although he acknowledged that the tubes could be very uncomfortable.  He deferred to intensive care experts.  At present, Charlie is on morphine.

If Charlie is in pain or distress, every passing day is a cruel one.  The doctors are then in danger of violating another tenet of medical ethics: first, do no harm.  The experimental treatment would only be justified if the harm of keeping him alive in intensive care and the risks and burdens of the treatment (which include the risk of cardiac arrhythmia and the prolongation, even worsening, of suffering) were outweighed by the chance of achieving a quality of life that is worth living.  His current quality of life, all agree, does not reach that threshold.

Let us hope the forthcoming multi-disciplinary meeting will help the parties resolve their differences and avoid the need for further legal battles.

Daniel Sokol is a medical ethicist and barrister at 12 King’s Bench Walk, London.

[i] Hippocratic Writings, Lloyd, G. et al, Penguin Classics, p.140, Penguin Books: London (19830

  • Johanna Trimble

    As a patient activist who has been doing this work for over seven years, there is a word in this article that jumps out at me. That word is “significant”. The article states that the parents have pinned their hopes on the opinion of an American doctor. I am wondering if the word they are clinging to is that word “significant”. The doctor has said about restoring some brain function, that there is a “small but significant chance ” of some improvement. This word is understood by medical professionals almost completely the opposite to what those of us out on the street understand that word to mean. In medicine, it is used to express that the outcome of a study has reached a level of statistical significance that is more than an outcome that would only have occurred statistically by chance. But when we members of the public hear the word “significant” what WE hear is that it is “important” or notable . That’s how the word “significant” is understood by most of us. I would like to see this word either not used or explained more fully so that members of the public can understand the meaning when used in healthcare.