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On the website Neurologica — branded as “Your daily fix of neuroscience, skepticism, and critical thinking” — talk has turned to parental rights. Steven Novella, MD asks:
[Should] desperate parents, regardless of their educational or cultural background… have absolute authority over the treatment of their very sick children, or does the state have some authority and responsibility to defend the welfare of every sick child?
You can probably guess my position. Children deserve basic medical care and an opportunity to grow up to be adults who can then make their own decisions about their beliefs and the healthcare they choose. Parents should not have the right to condemn their own children to an early and unnecessary death simply because it suits their worldview.
To me these cases are crystal clear. Adults can treat themselves anyway they wish. However, parents do not have the right to harm or neglect their children for any reason. One of the primary duties of the state is to protect the vulnerable, those who cannot protect themselves. There is a broad consensus that children are a vulnerable population and need at least a basic level of protection.
This can be done while remaining sensitive to parental feelings and rights. I don’t think draconian measures should be imposed on a hair trigger. But there is a certain threshold that should not be violated. Parents, in my opinion, should not be allowed to refuse life-saving medical treatment for their terminally-ill children.
I can’t say I share Novella’s certainty.
On the one hand, it’s difficult to imagine a circumstance more appropriate for state action than protecting a child from abusive parents; no other kind of citizen is so vulnerable or so poorly qualified to defend their rights against malefactors or the negligent. On the other, it’s equally difficult to imagine a circumstance more susceptible to abuse by overzealous authorities; family life is famously difficult for outsiders to evaluate and children are often unreliable witnesses for the same reasons that make them vulnerable.
Conservatives and libertarians alike tend to be hawkish on the subject of parental rights: some of it is old-fashioned American populism — “I don’t want some stuck-up fella from Warshington tellin’ me how to raise my kids” — but everyone I know who has dealt with child protective services or the foster care system knows Kafkaesque horror stories of bureaucrats or do-gooders who’ve destroyed families for spurious reasons. The Justina Peltier case here in Massachusetts was a prime example of what can happen when you combine the worst aspects of power with ambiguous facts.
My tentative judgment is that the bar for usurping parental rights should be set exceedingly high; a government big enough to save a lunatics’ child is likely big enough to grab yours unjustly. In the short-run that likely means more children dead who might well be saved, which is an unbelievable tragedy.
In the long-run, however, it may be for the best. The damage done to the medical profession by cases like the Peltier’s is extraordinary: I’ll certainly be wary of taking my kids to Boston Children’s Hospital when we have them, and I know others who think the same. Moreover, even the best, most medically-sound treatments fail sometimes. Imagine the paranoia that spreads when a child is seized by the state against his parents’ wishes, only to die under its custody by sheer bad luck (a treatment with a 90% success rate still fails 10% of time).
I do wholly agree with Novella that the state should come down like a ton of bricks on those who knowingly peddle psuedo-scientific nonsense to the desperate, giving them false hope and endangering their children’s lives.
They have contributed to a culture in which science and doctors are not trusted, and where everyone feels empowered to be their own expert and do whatever feels right. They have promoted “health care freedom” and “right to try” laws that sacrifice standards of care and ethical practice so that the gurus can make any claims they wish and practice any nonsense that suits them.
If there are any true villains in these cases, it’s the charlatans who are laughing all the way to the bank on others’ desperation.Published in