Shouldn’t parents know best?

Charlie Gard was a very sick boy born with mitochondrial DNA depletion syndrome, a rare disease with no known cure resulting in death in infancy. During his hospitalization at the Greater Ormond Street Hospital (GOSH), his parents found Dr. Hirano of Columbia University who was willing to offer an experimental therapy that had a slight chance of possibly extending Charlie’s life. They needed GOSH to approve the patient transfer but GOSH refused. Their physicians argued that Charlie was so sick and the therapy was so unlikely to work that it was wrong to even attempt. The UK High Court of Justice confirmed GOSH’s position and Charlie died under hospice care on July 28. Here is why you need to care.

The hospital argued that Charlie’s parents were wrong to consider further treatment. But that isn’t surprising. We recognize that parents differ in style and what one set of parents allows and desires for their children may not be the same as another. But here, Charlie’s physicians argued that what his parents wanted would cause harm of such magnitude, was so overbearing and unreasonable, that the decision had to be snatched from their hands.

It’s important to realize that this was not about money. While we often choose not to think about it, decisions about how to allocate our health care dollars carry very real consequences. When we treat X, we are effectively diverting our finite medical health dollars from Y. Charlie’s case was different, since once his parents went public with their story, they quickly raised more than was necessary to cover all of Charlie’s care.

There was also no argument about the medical facts. The GOSH physician who testified against Charlie’s transfer pointed out that he and Dr. Hirano did “not really differ on the science and both agree that, very sadly, [the experimental treatment] is extremely unlikely to help Charlie.” Not futile, but extremely unlikely.

Charlie’s level of pain and suffering was difficult to gauge. Initially, he was not on any pain medications and toward the end of his life, he was receiving only low dose morphine – all indicating that the intensivists taking care of him felt that his pain could effectively and easily be managed. Any discussion of suffering was not meant in the classic manner that we talk about it in everyday speech.

The question was whether Charlie’s life was worth living.

Was it in Charlie’s best interest to live or to die? Politicians, pundits, institutions, and religious leaders quickly lined up on both sides of the debate. Both sides took almost absolutist positions in arguing that they were right.

There’s a lot to say about the content, style, and tone of this debate. But that will wait for another time.

The fact that reasonable people took reasonably different positions on a life or death matter should at the very least indicate that it’s just not that clear cut.

You don’t have to agree with Charlie’s parents trying to keep Charlie alive, even while acknowledging that he may never regain consciousness or be able to recognize them or experience many or any pleasures of life. Maybe you think that life is only worth living if X or Y is possible and since Charlie could never do that, then it’s not worth pursuing the therapy. That debate is also important — for another time.

But isn’t it also reasonable that others may have a different perspective?

Some view life as worthwhile. Period. Not if Charlie could eventually do X or Y, but so long as he could live, he ought to want to live. It’s not ludicrous, it’s not outlandish – it may just be an opinion different than your own.

Modern bioethics considers patient autonomy to be almost sacrosanct, championing individual liberty almost over all other values. Physicians will rarely treat over patient objection and will respect a patient’s choice to undergo therapy. The ethic of informed consent means that a patient has the right to make a decision that might differ from that of his or her physician.

Charlie could not speak, but his parents were crystal clear in their firm desire to keep him alive. Granting parents decision making power for children is a cross culturally and internationally accepted notion. There is indeed an ongoing debate as to how to incorporate a child’s voice into the debate as that child approaches maturity and adulthood, but Charlie was 11 months old. Our society universally agrees that parents have not only the right to make decisions for their children, but a moral responsibility to do so.

Just because a group of physicians feel that Charlie would be better off dead, was his parents’ opinion to the contrary so egregious, so harmful, and so destructive that it is so easily summarily dismissed and their parental rights and responsibilities stripped from them?

Charlie’s parents wanted Charlie to live. They admit that it would not be an ideal quality or even quantity of life; but that was not the hand they were dealt. Charlie’s pain was managed, the finances were taken care of, and a physician and hospital willing to treat him were ready and waiting.

But the court argued that the physicians and the courts knew better what was best for Charlie.

This is a scary precedent. When it comes to the most basic question of life and death, parents were denied the ability to decide for and care for their children in way that they thought was responsible.

Charlie’s case was indeed exceptional on a number of fronts and many pray that such a terrible situation never befall them and prefer not to think about what might happen if it did. But what happens when it comes to issues that are considered more ‘mundane’?

With no relevance to Charlie’s case, not three days after Charlie died, the American Medical Association Journal of Ethics published an[other] article arguing that brit milah is a ‘physician induced injury’ and should be condemned. How long before a court decides that parents no longer have the right to decide that a brit milah is also in their son’s best interest?