Right to Try

Charlie Gard's Case Shows Why Government Should Stay Out of End-of-Life Choices

Assisted suicide, experimental medical treatments, and slippery slopes


Charlie Gard's parents
David Mizoeff/ZUMA Press/Newscom

In California, the government is documenting what happens when citizens can turn to medicine to end their own lives. In the United Kingdom, the government is forcing parents' hands in the case of an infant with a life-ending medical condition. Two news stories about the government's role in end-of-life issues highlight the potential slippery slope where a recognition of individual liberty transforms into a manifestation of official authority and control.

California lawmakers passed right-to-die legislation in 2015. It permits doctors to prescribe life-ending medication to adults with terminal illnesses and likely less than six months to live.

Now that the law is in place, the state is keeping track of who actually decides to end their own lives this way. Its first report, covering June to December of 2016, determined that 111 people committed assisted suicide in this fashion. The vast majority were over the age of 60 and receiving hospice care.

In the United Kingdom, the government is deciding for itself when to pull the plug in a case sparking international news coverage and horrified responses. Charlie Gard, an infant with a serious and rare genetic condition and significant brain damage, is terminally ill. His parents would like to pursue an experimental treatment in the United States. Doctors, granted authority by the British government and their socialized medical system, have told them no. They are ordering that Gard's life support be shut down. The parents turned to the European Court of Human Rights for support and were rebuffed.

Note that this is not a matter where the British government is being asked to bankroll Gard's experimental treatment. The parents themselves have raised the money to bring him to the United States. Rather, doctors and the British government are overruling the parents and deciding that they have the authority to an end the child's life and what they believe to be the child's suffering.

While it seems unlikely that the treatment in the United States would change Gard's tragic fate, this case should nevertheless be seen as a dangerous assertion of authority disguised as mercy.

For libertarians or anybody who supports an individual's right to end his or her own suffering, what's happening in the United Kingdom is an important and useful reminder of why some conservatives are wary about allowing this right. There is a slippery slope here: An individual's right to decide can transform into a government's insistence on making that call for those who aren't in a position to assert themselves. Western governments use their authority to override parents' decision-making in many areas, from schooling to vaccinations. But what's supposed to be a mechanism to shield children (who have little agency) from parental abuse becomes a method for paternalistic intervention.

After all, what Gard's parents are doing is essentially the opposite of what should trigger government intervention. They are not abusing the child. They are doing what parents are supposed to do: everything they can to save him. And they should have the liberty to do so.

It should not be difficult to avoid the slippery slope that transforms voluntary euthanasia into government-sanctioned termination. It's a matter of respecting the choice of the individual or those who are responsible for making those choices. Government intervention should be limited to situations where it can be shown that the private responsible parties are abusing or neglecting the patient, or where there are no private responsible parties.

One other issue worth examining in the Gard case: The authorities have been quick to dismiss this experimental treatment because it probably won't work. They are probably right. But that's not where medicine and science ends. The development of treatment for an illness is an iterative process that includes many, many failures along the way to success.

The fight between Gard's family and the British government resembles the "right to try" movement, which aims to loosen regulations that keep terminally ill people from trying experimental and not fully government-approved treatments. Consider the discovery of how cannabis oils can be used to suppress serious seizures in children with rare forms of epilepsy. The government's war on drugs and politicians' insistence that marijuana cannot possibly serve a health purpose has created real, life-threatening barriers to the development of this treatment.

Unless the government can show Gard's parents to be abusive, dangerous people, it should not have the authority to overrule them. And unless the government can show a person lacks the capacity to make adult choices, it should not get in the way of the choices they make to end their suffering, even if it means ending their own lives. The easiest way to keep authoritarian demands out of end-of-life choices is to limit the government's role in those choices—and in the choices that lead up to those circumstances, like health care options.