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The impending death of Charlie Gard

The impending death of Charlie Gard

Last updated on: July 2, 2017 at 5:02 pm by Jane the Actuary

The impending death of Charlie Gard 2017-07-02T17:02:12-06:00 Jane the Actuary

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In the news this week, per the Daily Mail’s usual wordy headline, “Terminally ill baby Charlie Gard’s parents ‘utterly distraught’ after losing final appeal in European court – meaning their son’s life support WILL be switched off.” This is the case of a British baby whose parents had sought to take him to the U.S. for treatment, after raising private funds to do so. Not only would the British hospital not perform the experimental treatment, but they would not let the parents discharge him to bring him to the United States to do so.

One’s first impression is that this is a case of how far parental rights should go in determining appropriate medical treatment.

In the same manner as a Christian Scientist, or a member of another faith-healing religion, might refuse to provide medical treatment for a child, and the court might step in to say, “this decision will produce severe harm to the child,” so, too, the court has said, “the proposed treatment will harm the child, by causing an unacceptable degree of pain during the course of a treatment that is unlikely to succeed.” It’s like those stories on Chicago Med, where the parents grasp at any extreme measure to keep the child alive, until they are wisely persuaded to let go.

The Vatican’s official statement likewise seems to be proceeding from that understanding:

The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.

But that wasn’t really the case here.

The proposed treatment in the U.S. was a red herring. This isn’t really about “aggressive medical procedures.” This is certainly not about the NHS considering it morally wrong to spend so much money, even if it’s someone else’s money.

What really seemed to have happened is that the court decided that, because of the severity of his impairment, the child should not continue to live. It was not the treatment that was a “burden” but the very fact that Charlie lived, was considered to be a burden to him.

According to the Telegraph,

Katie Gollop QC, who led Great Ormond Street’s legal team, suggested that further treatment would leave Charlie in a “condition of existence”.

She said therapy proposed in the USA was “experimental” and would not help Charlie.

“There is significant harm if what the parents want for Charlie comes into effect,” she told appeal judges. “The significant harm is a condition of existence which is offering the child no benefit.”

She added: “It is inhuman to permit that condition to continue.”

And the court, and all possible appeals courts, agreed — the State had the final right to decide that this child was, indeed, “better off dead,” though these words are not used.

What does the UK (or the EU, in general) do in other cases of people impaired to this most extreme degree? It would seem that this reasoning would require them to “pull the plug” (that is, remove a ventilator) in all such similar cases, whenever a doctor determines that there is no hope of improvement. What actually happens in practice I am unable to find without more extensive research.

Now, I don’t believe that one is morally obligated to keep the ventilator going. I think this is an appropriate matter for personal choice. It’s also not clear whether, in the case of an adult in similar circumstances, or if it were a matter of withdrawing nutrition rather than breathing support, the State would make the same decision.

But their reasoning, that it is “inhuman” to allow Charlie to continue to live, is deeply disturbing.

Added: the commenter Locke observed that there is a financial element to this, even if not with respect to the cost of the treatment itself, because, upon returning to the U.K., the NHS would be obliged to bear the expenses of caring for Charlie, for some unknown period of time. Charlie is thus, in their eyes, not just “better off dead” but a “useless eater” as well.

UPDATE: According to the AP, the Vatican, or, that is, Pope Francis specifically, has “changed its mind” or, at the very least, clarified its view.

In a statement, the Vatican press office said Francis “is following with affection and sadness the case of little Charlie Gard and expresses his closeness to his parents. For this he prays that their wish to accompany and treat their child until the end is not neglected.”

It would also seem that there is a matter of factual dispute. The Telegraph article states, ” nobody knew whether Charlie was in pain,” and, indeed, the hospital’s argument was not a matter of pain but simply that the life of anyone who is as severely disabled as this boy is, is not a “real life” and should not continue.

But The Guardian reports of the European Court’s decision, in contrast,

It said: “The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”

Is Charlie in pain? Did the European Court believe that he was in pain? Or did they use this possibility, however hypothetical it might be, as a justification for their decision?

Because there is a difference. It does matter. Parents who cart their child from one doctor to the next hoping for a lifesaving treatment, when that child lives in pain, could reasonably be said to be making inappropriate decisions. Doctors, or governments, on the other hand, who want to terminate the life of a child, because they consider that life “unworthy of life,” should never have that power.

Image: now noncopyrighted images of Charlie are available. This is Great Ormond Street Hospital. https://commons.wikimedia.org/wiki/File%3AGreat_Ormond_Street_Hospital.jpg; Nigel Cox [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

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