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On Parental Rights
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?
He continues:
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 General
What brilliant tautology! “Parents do not have the right to deny medical care to children because children have a right to medical care.”
Our family’s experiences with hospitals always made my mother wary of the calls made by an ER doctor who is isn’t really paying attention.
We have more than one story of one us kids being admitted with my mother having a significant insight into what was wrong with us that the doctor ignored until she pressed the issue.
I’m not terribly keen on making it standard practice for doctors to overrule parents. As a rule, the parents care more about the safety of their children than anyone else on the planet, while the state is utterly incapable of caring about what happens to you.
I agree with Tom, the bar should be set exceedingly high.
To give one example, one day my oldest sister was in a lot of pain, and my mother brought her to the emergency room. Listening to her on the drive over, my mother discerned a couple of things.
1) That she was in real pain (my oldest sister was a bit of a whiner, but a mother knows the difference)
2) What she was describing reminded my mother of the pain she had before her gallbladder had to be removed.
Upon speaking with the Doctor, my Mother explained what was happening, and posited that it might be her gallbladder. The ER Doc dismissed this idea out of hand, and preceded to do tests. These came back negative. He did more tests which came back negative.
At this point, he decided that my sister was faking, which my mother knew wasn’t correct. At this point, she insisted that they look at her gallbladder. That test found gallstones.
The doctor then stated that he still didn’t think this was the problem (people with fancy degrees don’t like being proved wrong by people without them) to which my mother said “Do the surgery.”
Problem solved.
The very idea that anyone thinks he’s better prepared, or is even in anyway willing to make decisions for my kid…. freaks me out. Totally. Freaked. Out.
We had some incredibly scary decisions to make with our daughter’s health crisis. The weight of the responsibility was… indescribable. Life or death potential in our hands. I mean, for godless folks?… I don’t know how they do it. We just had to trust Someone bigger than ourselves.
And, although our daughter was in crisis, she wasn’t terminally ill. You caught that — right? He’s talking about terminal children. Anyone have any experience of what treatments are like for terminally ill patients? Let’s just say, doctors opt out when their lives are ending. They’re either cowards, or they know better.
These busybodies should stay the hell away from our kids. Grrr.
I believe adults basically have an absolute right to refuse outside medical treatment for themselves and their minor children. That said, I also recognize that, for some children, seeking medical help behind their parents’ back is the right thing to do. (I’m not using “medical help” as code for abortion here, but for, you know, actual medical help). Sometimes defying your parents is useful, but no outside agency should have the authority to coerce children into defying their parents.
Along with the right to refuse outside treatment comes the right to choose whack-a-doodle treatments instead. I knew one kid in college whose parents thought enemas were the cure for everything. The kid quite rightly thought his parents were weird, but he seemed very fond of them nonetheless, and, to tell the truth, more well-adjusted than most of us.
It just isn’t possible to catalog all the ways in which parents can seriously damage their children. Even something as innocuous as making a child eat his vegetables when he protests he’s “allergic” may have potentially lethal consequences. It’s not unusual for kids to invent all sorts of tall tales to get out of eating a food they don’t like, but every once in a while the child is telling the truth. The number of adults sick enough to deliberately inflict anaphylactic shock on their own children is much too small to be worth bothering with, but I imagine that unwittingly inflicting anaphylaxis on your children through the course of normal parental discipline is much more common.
Most kids, though, survive their parents’ ministrations, even the destructive ones. Parents have a unique interest in caring for their own kids, and unique personal knowledge of their kids. I think it’s best to trust that those things are almost always strong enough to outweigh specific manifestations of parental delusion or incompetence.
Um. Mothers don’t always know the difference, even with a child they don’t regard as a serial whiner. Ours quite frequently couldn’t tell the difference. She was a great mom in other respects, though.
I agree that most mothers are well-equipped to know the difference. And even the mothers who aren’t can turn out OK children.
That’s not always an easy call. For example, one case Novella mentioned was a girl with Leukemia – which now, with aggressive treatment has about a 60% survival rate in children. In this case, the parents put the child on chemotherapy as suggested by the doctor, but as the child became sick from the chemo as everyone does, the parents opted to pull her off the treatment in favor of ‘naturalistic’ therapy. The child subsequently died from the cancer.
Should the state have gotten involved in this on behalf of the child? I’m a libertarian, but in cases this clear-cut I think the state should have intervened.
I agree that the bar should be set very high, but there are definitely cases that warrant state involvement.
My response is nowhere near as nuanced as Tom’s. Health care and social workers may never, ever overrule parents’ wishes for their children.
This belief was cemented in me way back in 2005, when I heard the story of Katie Wernecke in Texas. She suffered from Hodgkin’s disease, and was given chemotherapy, but her parents did not want to subject her to radiation treatment. The doctors contacted the Texas Department of Family and Protective Services (DFPS), who then proceeded to try to remove her from the family home, and (upon finding that she was not home) issued an Amber Alert against Katie’s parents until she was found. Then, for good measure, DFPS took the Werneckes’ other two children out of the home. Long story short, when she was finally freed from hospital/state custody and given the treatment the parents wanted in the first place, she recovered.
Medical people can and do make mistakes. Those mistakes should not split up families or overrule parents.
Yeah, I find that a very hard one, too.
Again, I think a strong case against intervention is that if the child died while in the state’s custody — which there’s a 40% chance of — that all but guarantees a fiasco (e.g., “They stole my child from me and she died. All I wanted to do was have her treated by [[insert pseduo-scientific practice here]]”).
On the other hand, there’s a dead kid who would have had a fighting chance at life had she been taken from her parents. Toughy.
“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.”
There’s no group that peddles more pseudo-scientific nonsense than the medical profession. To more harm of more people. That goes double for psychiatrists, which is an entirely unscientific profession, IMHO.
Suffice it to say, I’ve had enough bad experiences with the medical profession, and enough experiences where I’ve been able to debunk their prescriptions through a little reading of the medical literature, that I’ve learned to be extremely careful with them. They’re not all quacks; but enough of them are quack-like that one needs to treat them as one would a snake.
Novella is the founder of a blog titled Science-Based Medicine which I’ve been closely following for four years now. Here’s a comment from one of his colleagues, from when I started reading the blog:
My summary at the time was:
“This looks like an interesting site, but also a fine example of how ideology permeates the academy, even areas that ought to be ignoring it.”
After four years of reading that blog, my opinion of the medical profession is lower than when I started. And I certainly can’t see having that lot responsible for our children.
I think we’d be better off going back to the Roman model, where the parents are responsible for the children, and the state stays out; then making all children wards of Novella’s socialist paradise.
Every single CPS I’ve heard of is constantly scandal-ridden and under reform.
So — to take the most extreme example — if a parent refused to admit a kid with treatable-but-otherwise-fatal cancer and, instead, insisted on treating them with homeopathy, you’d never consider taking them away? What if the kid wanted the real treatment?
The cloud on the horizon no larger than a man’s hand is children whose parents haven’t had them vaccinated. We have increasingly large numbers of parents who aren’t vaccinating their children, which has brought back all kinds of diseases that ought to be extinct: measles, whooping cough, mumps, etc.
My proposal in this case is that if a unvaccinated minor spreads the disease to someone immunocompromised, the sickened person should have the right to sue the parents.
I don’t agree that it’s so clear-cut.
As you mention, the “aggressive treatment” has about a 60% survival rate.
Why is it the state that gets to decide that 60% is enough to impose, under threat of force, a medical procedure that will have really rather serious side-effects on the child?
Why is it “clear cut” that a parent cannot be justified in deciding that it’s not worth putting their child through the painful side-effects of chemo when the odds of the treatment being successful are 3 out of 5?
If a 60% survival rate is sufficient to take the decision away from the parent and hand it over to the doctor, how low would the survival rate have to be for the decision to revert to the parent? 55%? 50%? 40%
The Pelletier case is scary. I’d never heard of it before. How could the parents be accused of “medical abuse” when they had another, credible doctor who supported the existing course of treatment? Sounds bonkers.
I get tired of qualifying every statement of near absolute truth. So I don’t. And I won’t. Reasonable people can simply assume I know that there are exceptions to rules.
I thought about including that, but vaccinations are a slightly different story on the grounds that they deal with communicable diseases that can be spread to others outside of one’s control. As such, I think some degree of coercion is more easily warranted.
“Parents should not have the right to condemn their own children to an early and unnecessary death simply because it suits their world view.”
So, is it safe to infer that the good doctor also believes that there is never a reason to permit an abortion?
Until he can deny abortions, his other statements about how parents are allowed to treat their kids ring hollow. My guess is that as a Yale Medical prof, he won’t be inclined to.
Steve Jobs’ had an unusually treatable form of pancreatic cancer, but opted to put himself on carrot juice. Should the government have intervened?
Life is full of pant-loading scary decisions. We all do the best we can. The rupture between parents and their ill child may be just as bad as anything anyone decides for the child should the government intervene. Tragedies happen, but my overwhelming response is, barring abuse — keep the state out!!
I just had to go to the pediatrician’s office and show my ID to pick up the (paper) prescription for my kids’ cough medicine. They couldn’t email or fax it to the drug store last night (when we needed it) because the syrup contains codeine.
The state is already monitoring and questioning everything I do with regard to my kid’s health. Everything. Trust me. You should see the file of reports. Providers are careful to protect our interests. So far.
You mean a chance to be killed by the treatment?
These treatments can be very dangerous, you’re claiming the right for a third-party to gamble with the life of another person’s child based on what? Fancy credentials?
Mike!
The question is, what should be the state’s default position when the facts are ambiguous?
Should the state side with the parent, knowing that parents make mistakes, or should the state side with doctors, knowing that doctors make mistakes?
One argument for defaulting on the side of the parent is that regardless of which side makes the mistake, it’s the parent that has to deal with the consequences.
Say that the child is one of the 60% who can be saved by chemo, and the parents refuse. It’s the parents, not the doctors, that suffer the consequence of that decision when they lose their child.
Say that the child is one of the 40% who cannot be saved by chemo, and the state insists. Again, it’s the parents rather than the doctors that suffer the consequences of that decision (absent any clear evidence of medical malpractice) when they lose their child.
In both scenarios, absent clear evidence of malpractice, the doctors in the case suffer no direct negative consequences. One could argue that officials shouldn’t have the power to impose a decision by force if there are no consequences for the official if the decision doesn’t result in the desired outcome.
In both cases, it means gambling with a person’s life. However, in one case it’s the parents gambling with their own child’s life, and in the other case it’s a doctor gambling with a stranger’s life.
“With these latest revelations, medical errors now claim the spot as the third leading cause of death in the United States, dwarfing auto accidents, diabetes and everything else besides Cancer and heart disease. Harvard’s Dr. Lucian Leape, the father of the patient safety movement and one of the experts behind the original IOM report, says the numbers in this new study should supplant the IOM estimates from 1999. That means hospitals are killing off the equivalent of the entire population of Atlanta one year, Miami the next, then moving to Oakland, and on and on.”
Those are reported medical errors. Non-reported ones only add to that total, of course.
Overall I’m firmly in the “bar should be set high in favor of parents rights” camp. However, that opinion does come with some qualifications.
First, while medical professionals don’t know the kid better than the parent, they do know medicine better than the parent. I know there are a ton of examples of blowhard physicians insisting that they are right no matter what (a la Frank’s example). But, there are an equal number of parents doing exactly the same thing, and getting it wrong. I don’t know how you legislate between these two (and I don’t necessarily literally mean ‘legislate’), but if we’re going to talk about parents having bad experiences with doctors, we have to talk about the opposite problem.
A general example of this is the phenomenon of drug ads on TV. Physicians, midlevels and nurses have to deal with patients constantly coming in, convinced that they need something they saw on CBS last night with no clue what it really means.
The other issue that is somewhat tangential but definitely relevant is the desperate need to reform med-mal. The constant threat of lawsuits if everything doesn’t go perfectly has so badly skewed medical care that it’s hard to parse out what is actually being said and done in a physician’s office – and, more importantly, why. The medical field, tragically, is largely in the business of risk-mitigation rather than medical care.
Exactly.
OK.
That said, for a person whose mom often didn’t know the difference to be as absolutist about parental rights as I am would strike many people as an argument against interest, and therefore potentially interesting.
I’ll answer your reductio ad absurdum with one of my own.
There is a body of knowledge that babies are safest if put to sleep in a crib, uncovered, on their backs. Despite hospital and public-education campaigns to encourage this practice, many children each year die due to parental errors in how they sleep.
Do we then allow police officers unrestricted access to houses containing babies, to ensure proper sleeping placement? How about centrally-monitored video cameras in nurseries. After all, if it can save just one life …
Where do parental rights over ones children give way to the right to life. That seems to be what is at stake here. As a libertarian I am always cautious of giving the State power over our lives, where I am less circumspect in this is in regards to the truly powerless. Its why I am an increasingly pro-life libertarian and why, in certain cases, I would be for the State protecting the life of helpless children even against their parents. Its a very tight rope to walk and I’m unsure how to do it.
You’ve heard the expression: “If there’s smoke, there’s fire”? Malpractice lawsuits are so high because malpractice is so high.
The fix isn’t to lessen the legal burdens, but to improve the practice of medicine.
A related point:
I’m surprised we don’t have more of a call from Pro-Life Activists for state intervention in these cases.
People who are Pro-Life think government should intervene to protect the unborn from their parents decisions and yet they are curiously silent when it comes to parental decisions on those children once they are outside the womb. (Or in the case of WC – advocating an entirely contrary position)
That’s a really good way of putting it.