The case of the young English infant Charlie Gard is both heart breaking and a teachable moment, all at once.
The child was born with a terrible genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, more generally referred to as “MDDS.” The disease is incredibly rare, with only about a dozen cases documented worldwide. The diseases causes seizures, brain damage, respiratory failure…and rapid onset of death.
The baby lived in the NICU of Great Ormond Street Hospital in London for 10 months, were valiant efforts were tried to treat the child. However, the doctors then deemed that the case was hopeless and recommended to the parents that they remove all life support.
The parents refused.
There was one experimental treatment that was available; it was a fool’s hope, maybe, but it was the lone last hope for grieving parents. And although the National Health Service (NHS) of England does supply universal health care for all citizens, the parents didn’t depend on the NHS to supply any additional care. They independently raised the tens of thousands of Pounds necessary to travel to the US and try this therapy.
And that is when the powers that be stepped in.
In April, the English High Court supported the doctors argument that life support should be removed. This was followed by the Court of Appeals upholding the initial decision. Then earlier this month, the Supreme Court agreed. And then a few days ago, the European Court of Human Rights refused to intervene.
The court’s decision stated that death was “in Charlie’s best interests.” Their own words, not mine.
Now, there is very good scientific reasons to believe that this experimental care would do little to no good for the long term benefit of the child. I fully stipulate that.
But this child is going to die. And what the United Kingdom, and the EU courts, basically argue is…the parents do not have a right to provide health care as they deem fit for their child.
In short, they are stating there is no right to health care in the European Union.
I would argue that the goods and services of one individual can never be considered a right to all individuals, ever. Such a ‘right’, in the extreme, leads to concept that slavery of those individuals, if necessary, is acceptable to achieve the goals of the stated ‘right’. True ‘rights’ are those that allow individuals to act for themselves, without the benefit of others, to promote their own well being. Health care does not fit in that category whatsoever; it is a privilege that certain government’s deem appropriate to provide their citizens depending on the situation…as in this case.
The irony is that in this case…the government went even further. These parents asked for no additional funds for their choice; they were willing raise those themselves. They simply wanted to make the personal choices on their health care that they deemed appropriate, within their world view.
The government said that was unacceptable.
Why do I argue over this point? Because it goes back to the inherent meaning of what is a individual ‘right’, and what is simply a privilege that is deemed upon individuals by a government. Among the most basic choices we have is the right of choosing how we live, and how we die. In this case, not only does the government take away the right to health care, but also took away the choice of how this family wanted to approach death…the most personal of choices.
There are plenty of treatises over the millennia regarding what is a right; whether there is such a thing as a ‘natural born right’; and of government’s relationship to the individual in protecting and guaranteeing rights. One thing becomes clear as you go through the philosophical debates: a ‘Right’ cannot be randomly repealed by officials in power, and still be deemed a ‘right’.
And such an item is no longer a ‘right’…but is a privilege, bestowed upon the individual depending on the whims of officials, bureaucrats, and whatever political winds are blowing that day.
The inherent problem with the decision in this specific case is that the judge preempts the wishes of the parents, who everyone recognizes as the best arbiter of deciding what is best for the child. First, there is no real question of risk here; the child is very likely to die regardless.
Furthermore, even though the UK has the ‘right’ to health care…this child didn’t have a right to the health care his parents had chosen, proving there is no real right to health care; there is simply the benefit to access to care that the government, and only the government, accepts as reasonable, which is a wholly different definition.
But the UK courts, in their arrogance, supersede the rights of the parents to decide what health care is reasonable for their child, with their own opinions, faith, and beliefs.
In short, they preempted the rights of the family, and the child, to deem what health care choices are best for them.
Ian Tuttle of National Review had a brilliant piece that summarizes it thus:
The question, then, is not what would Charlie Gard want — a question no one can answer. The question is what do we owe to people such as Charlie, who cannot speak for themselves? What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity? What obligations do we have to those who suffer, and how should we understand their suffering? And, pertinent to this case, under what circumstances should the tightest bonds of affection — those between parent and child — be subordinated to the judgment of the state?
Once the state decides that they, and they alone, get to make health care decisions for anyone…the rights of the individual are no longer absolute. And a ‘right’ which is not absolute and inviolate from the whims of courts and politicians is no right at all.