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.

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  1. Bryan G. Stephens Thatcher
    Bryan G. Stephens
    @BryanGStephens

    I disagree. Sorry, but if the State can step in here, where else might they step in? The state in the UK already takes kids away from their parents for being too fat.

    George Rapp: My response is nowhere near as nuanced as Tom’s. Health care and social workers may never, ever overrule parents’ wishes for their children.

    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?

    Depends on the age of the kid. But, have to draw a line someplace.

    • #61
  2. user_1700 Coolidge
    user_1700
    @Rapporteur

    Tom Meyer, Ed.:

    George Rapp: I’ll answer your reductio ad absurdum with one of my own.

    Well, that’s not really answering it and it’s not really very absurd. It happens; desperate parents often make very foolish decisions about their childrens’ welfare and are easily seduced by pseudo-science. Both of Novella’s cases are pretty close to the hypothetical I described.

    To answer your question, no I don’t think that’s necessary at all. As I said, I put the bar at superseding parental rights very, very high. Sadly, that leads to some kids dying who might otherwise be saved but — on balance — I think that’s for the best. It’s just very sad.

    Then I’m not sure we really disagree. Kids dying unnecessarily is sad — but state intervention in family matters is pernicious.

    • #62
  3. Midget Faded Rattlesnake Contributor
    Midget Faded Rattlesnake
    @Midge

    Jamie Lockett:

    Tuck: The parents are the ones with the highest stakes, as Mithiocracy noted.

    No. They aren’t. Clearly the child has the highest stakes.

    True, the child may face death or lifelong maiming. But the parents have to live with having allowed the death or maiming of their own child, so the stakes are very high for them, too.

    Death from another’s decision is bad. Lifelong maiming from another’s decision might be even worse, depending on  your tolerance for pain, confinement, and impairment. Living with having caused another’s death or maiming, though, is also very bad, and it’s a safe bet most parents would rather not live with that, especially where their own child is concerned.

    • #63
  4. Midget Faded Rattlesnake Contributor
    Midget Faded Rattlesnake
    @Midge

    Misthiocracy: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?

    For that matter, when and why would parents forgoing medical treatment for their child on the grounds that the financial cost of treatment was too much to bear for the family as a whole be considered unjustified?

    Medical treatment is costly in many senses. In money, in pain and inconvenience, and sometimes in lifelong misery. We tend to think of hospice as an option for the very elderly, but is it so hard to imagine a scenario where choosing a hospice pathway for your child over costly heroic measures might be the humane choice?

    • #64
  5. raycon and lindacon Inactive
    raycon and lindacon
    @rayconandlindacon

    Jamie Lockett: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.

    We take your comment a giant step further;  as parents we are held accountable by God for the raising of our children, and the ensuring of the welfare of their souls.  Our children, as is true of ourselves, are born into an eternity, and it is their choosing during this life that determines the eternity that they will live into.

    It isn’t merely their health decisions that we are making, it is their upbringing into an understanding of their eternal value to their Creator that is in play here.  And it is during life and death moments that the seriousness of that process is being measured.  Does that “curable” cancer or tumor or psychological disturbance over rule the parental obligations towards their child’s eternal soul?

    Do the experts in medicine or the law own our child’s soul?

    Will they answer to God for their stewardship?

    • #65
  6. PsychLynne Inactive
    PsychLynne
    @PsychLynne

    Roberto:

    You mean a chance to be killed by the treatment?

    The authors assembled data on the reported cause of death for all patients in the Surveillance, Epidemiology, and End Results (SEER)1 program from 1994 through 1998 who died within 1 month of cancer-directed surgery for one of 19 common solid tumors. They found that for 41% of these deaths, the cause was not attributed to cancer. The authors speculate that cancer treatment is the probable underlying cause for essentially all of these deaths and, as a result, the cancer mortality rate is underestimated by 0.9%.

    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?

    First, solid organ tumors are not the leading cancers in children, so while SEER is an excellent data source–solid organ tumors are a relatively rare occurence in a very rare occurrence (childhood cancer).  The most common are leukemias/lymphomas and brain tumors.

    All cancer treatments are toxic (hopefully) to the tumor, and it is a good day when the tumor dies with the least toxicities possible.  However, interestingly, in the world of pediatric cancer, parents tend to consent to more aggressive treatment than they would accept for themselves.  That’s why the refusal of treatment makes the news.

    • #66
  7. PsychLynne Inactive
    PsychLynne
    @PsychLynne

    Another thing to consider is that if consent to treatment is easy to over-ride, the ground work is there to support refusal of perceived futile treatments requested by the parents.  It’s a sticky situation with difficult outcomes no matter how you slice it.

    • #67
  8. Mike H Coolidge
    Mike H
    @MikeH

    Tom Meyer, Ed.:

    George Rapp: My response is nowhere near as nuanced as Tom’s. Health care and social workers may never, ever overrule parents’ wishes for their children.

    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?

    I see there are a million comments already, but I’m going to give my two cents. The parents should have say, but the child should get a say as well, maybe the ultimate say. The child gets final say when the statistics are ambiguous to strongly in the child’s favor.

    The way I see it, it’s not morally impermissible to let someone die. It’s often not ideal and non-virtuous, but it’s not a crime.

    • #68
  9. Tuck Inactive
    Tuck
    @Tuck

    das_motorhead: but there is also the pervasive idea that medical treatment should be risk free.

    Yes, that’s true.  Although again, I’ll observe that this is often the result of doctors failing to mention side effects, and failing to prep the patient adequately for bad outcomes.

    Of course if they do that, they’re likely going to have fewer patients for some elective surgeries, and that’s bad for business.

    But I’ll note that if some other business, whose practitioners didn’t have the saintly status that doctors have achieved, had the same mortality rate, not one would be peeping about suing them.

    Just imagine the auto industry with the same body count…

    • #69
  10. Tuck Inactive
    Tuck
    @Tuck

    Jamie Lockett: All I’m trying to imply is that claiming the parents have the highest stakes in this decision is an untrue statement. Higher sure. Not highest. That matters.

    Not really.  Because no one thinks that children should be making these decisions.

    The question is which competent, decision-making adult has the highest stake.

    • #70
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