Two recent news stories have brought an important question into the public dialogue: How much power do parents have over the lives — and deaths — of their children?
In October, an Amish couple in Ohio, Andy and Anna Hershberger, took their daughter Sarah — who is suffering from a highly treatable form of non-Hodgkin lymphoma — and went on the lam to avoid subjecting her to the pain and trauma of chemotherapy. Just prior to the family's flight, medical specialists at Akron Children's Hospital had successfully lobbied a judge to appoint an independent legal guardian for the girl after her parents discontinued her treatment. The Hershbergers have reportedly left the U.S. to pursue an alternative regimen of herbs and vitamins. But doctors say the girl — who presented with tumors on her neck, chest and kidney — is unlikely to last another year without chemo.
Meanwhile, on the other side of the Atlantic, lawmakers in Belgium voted last week to make the nation the first in the world to formally sanction euthanasia for terminally ill children. To qualify under the new law — which its sponsors have called the “ultimate gesture of humanity” — a child must be suffering from a “medically futile condition of constant and unbearable physical pain or mental suffering that can not be alleviated.” Children seeking relief through euthanasia must be of “sound mind and judgement” and they need the consent of their parents.
No matter which side you fall on in the right-to-die debate — and for the record, I think that terminally ill adults enduring a protracted and painful death should be able to decide for themselves how and when they check out — extending that right to children raises some serious ethical issues.
On the one hand, subjecting a child to the indignity of a painful death — one that an adult in the same circumstances would presumably be able to escape — seems patently unjust. On the other hand, given all the things we don't let kids do because of their diminished capacity — things like drive a car and consent to sex, to name just two — handing them the responsibility of ending their own lives based on criteria as subjective as “mental suffering” seems ethically reckless.
Exactly how “sound” is a 7-year old's judgment? And can someone that age possibly understand the implications of a decision to end her own life? It seems much more likely that such a decision would fall to her parents, or at least be strongly influenced by them.
So, while the Amish and Belgian cases differ in the specifics, they both ultimately deal with the same fundamental moral dilemma: How much power should parents have over life and death decisions affecting their kids, and when should the state step in to take it away?
Philadelphians are no strangers to this question. For nearly five years now, since the death of their 2-year-old son Kent from untreated bacterial pneumonia, we've watched the controversy play out in the case of Herbert and Catherine Schaible — members of a fringe Christian group that regards faith in medicine as an affront to the healing powers of God. The couple was convicted of involuntary manslaughter and child endangerment in 2010 and sentenced to 10 years probation for their role in Kent's death. In February they face sentencing for the death of a second son, Brandon, who died in April of the same illness after his parents chose to pray instead of take him to a doctor. (Robert Hubert did a superb piece on the Schaible case for Philly mag back in October).
While there is near universal agreement that the Schaibles deserve to have the book thrown at them, the Hershbergers have received an outpouring of support for their decision to discontinue Sarah's chemotherapy. A nonprofit legal association has taken up their cause before the Ohio Supreme Court, and at least one group has already raised more than $5,000 towards the family's legal defense.
Assuming there is an ethical distinction between these two cases — and my guess is that at least some readers will see one — where do we draw the line?
If there is one thing every parent shares, it's the belief that they know what's best for their own kids. (If you want to put this to the test sometime, try giving a mother even the friendliest advice on how she can improve some aspect of her motherhood and see what happens.) Courts have tended to agree, and the law gives parents wide latitude in making all kinds of decisions that could potentially harm their kids.
In a 1979 case dealing with involuntary juvenile commitment, the Supreme Court opined:
“The statist notion that governmental power should supersede parental authority in all cases because some parents abuse and neglect children is repugnant to American tradition. Simply because the decision of a parent is not agreeable to a child or because it involves risks does not automatically transfer the power to make that decision from the parents to some agency or officer of the state.”
You can refuse to get your child vaccinated or even feed him McDonald's for dinner every night. But at some point — and this point varies from case to case — society says you've gone too far. The Hershbergers say they simply couldn't watch their daughter suffer through chemo treatments anymore — which is a feeling any parent could certainly identify with; and they were willing to risk their child's death to see that suffering stop. By the standards of one Ohio court, at least, they went too far.
I'm inclined to agree, which is why is why the idea of a parent actively facilitating the death of a suffering child, as some Belgian parents will no doubt soon begin to do, makes me uncomfortable. But like many ethical questions, I recognize there are gray areas yet to be explored. I can only hope I'm never called upon to explore them.
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