Charlie Gard
In March, parents trusted their doctors with the care for their son with a very rare condition. The doctors have now convinced courts to rule that death is more beneficial for the child than continued treatment. And, the parents can’t do anything about it.
Charlie Gard was born in the Fall of 2016. Unfortunately, he was one of only 16 children in the world to be born with mitochondrial depletion syndrome. The condition causes muscle weakness and brain damage. He became blind, deaf, and suffers seizures.
While on life support at a hospital in England, his parents began a crowdfunding effort to fund experimental treatment for their son. The treatment has not been shown to be effective, but a medical team in the United States is willing to administer it to Charlie. The Gards raised $1.3 million, more than enough to cover the treatment.
Instead, Charlie’s English medical team sought a ruling in the Family District Court to allow them to remove the life support mechanisms keeping Charlie alive. Charlie’s parents objected and fought against the ruling, but, ultimately the Family Court judge ruled in favor of the medical team.
The Gards went through a series of appeals, ultimately appealing to the European Court of Human Rights. However, like the Family Court, the European Court of Human Rights ruled that removing life support should proceed as maintaining his life support would expose him “to continued pain, suffering and distress.” Apparently, as opposed to dying.
Since the ruling, a hospital in Vatican City has invited the Gards to bring their son to their hospital for treatment. But even this option has been rejected by the British Foreign Secretary. He explained that it is “‘right that decisions continued to be led by expert medical opinion, supported by the courts’, in line with Charlie’s ‘best interests.'”
In the 1980’s, in Indiana in the United States, a child was born with Down syndrome and with a disconnected esophagus. The child became referred to as he was in court documents as “Baby Doe.” While the surgery to reconnect the esophagus was one with over a 90% success rate and performed on other children, his obstetrician advised his parents to not agree to the surgery and let the child die. His reasoning was that even with a repaired esophagus, Baby Doe would still have Down syndrome. His parents agreed. Advocates sought a ruling in the courts to compel treatment of Baby Doe, but, like the European Court of Human Rights, the Indiana Supreme Court ultimately ruled treatment would be more harmful than allowing the child to die.
Baby Doe happened over three decades ago, and yet, the injustice is happening again, and worse than before.
Unlike in Baby Doe, Charlie’s parents fought at every step so that their son would be given a chance at treatment, albeit experimental. But, like in Baby Doe, the courts deferred to the medical experts treating (or actually not treating) the child to find that death was less suffering than living.
Now, the conscience rights of the physicians should not be disrespected. To force anyone to provide care that that person believes is futile and may even prolong suffering, it can be understood they have certain rights to be considered as well. Most doctors do not seek to be an instrument of harm. But, here, there are options: there are medical teams in at least two countries willing to provide care to Charlie, and the parents have the funds to provide for that care.
Yet, still courts and Britain’s Foreign Secretary believe death is preferable to being alive.
One can only hope that, as in the wake of Baby Doe, reforms are passed and administered to more compassionately deal with these rare cases. Eventually, out of Baby Doe, federal legislation was passed that required infants born alive be provided medical care (as shocking and controversial as that idea may seem). Again, we must learn to act more wisely and compassionately.
Where medical care is willing to be provided to the child, the parents should have the ultimate decision on whether that care is continued rather than the alternative being, by Court order at the request of the child’s physicians, to watch their son die.
UPDATE: After a MRI scan, Charlie’s parents have decided to stop treatment due to his muscles atrophying too much to make treatment viable. His father provided a heart rending statement available here. From that statement, he sums up that the reason his son did not get a chance at treatment and life is because of “a whole lot of time has been wasted” due to the court battles. Truer words have not been spoken.
This article is misleading. As a practising pediatric intensive care physcian for over 30 years, yes it is is true that in the past children with DS and other ‘disabilities’ were palliated for reasons that even our courts would not agree with today.
But times have changed and it is generally accepted (or should be) that parents, given all the facts of a case including the uncertainty of the prognosis (and there is often uncertainty), have the right to decide the fate of their child, considering the child’s best interests (not their own as sometimes occurs).
The only real exception to this (and I do not now the medical facts of the Bard case in detail enough to say this is true for this case) is a child who is brain dead, or close to it, with no hope of a meaningful life of any sort, when physcians will challenge a family’s decision to continue life support.
Even then, brain death is not recognized in some countries or even states or my some faiths and thus this stance by physicians can be challenged. So it is a complex problem, but the shift has been almost completely to giving the parents the right to decide.
Family’s often decide in a direction that I would not agree with if the child was my own (though I would support them), as many still believe in miracles (I have not seen one miracle in 30 years of intensive care practice) and they distrust (and at times rightfully so) the ability of physicians to prognosticate.
I find that familes do not ever consider the implications to society and the world as a whole of long term expensive medical care. They have the right to ignore this cost of care and its impact on others, and physicians should not not to invoke this as an issue.
But also I think parents have an obligation to at least consider what greater good could be achieved by them focusing their life’s energies and societies resources on good causes other than keeping their child alive on a machine.
Its a tough topic. I hope these comments are useful to your readers.
Thank you for your thoughtful comment. I didn’t see what was pointed out from the main article as misleading, but your perspective as informed by your experience is appreciated. The main article recognizes that the conscience rights of health care providers should be respected as well. However, here, the record was that other medical experts differed with the opinion of Gard’s treating physicians and the parents wanted to have their son treated by the other physicians, but the courts stepped in and refused to allow them to do so. Where there is a genuine difference of medical opinion, the parents should have the final say on the care of their child. That did not happen here, which is why it is even worse, in that respect, than Baby Doe, since in the Baby Doe case, the parents agreed with the (biased, ignorant, and incorrect) recommendation of their treating physician not to perform surgery.