Nearly a year ago, a young girl was killed by her parents. She was dying of diabetic ketoacidosis, and her parents provided only prayer. They weren’t living on some compound under the thrall of some cult leader. They weren’t living in a third-world country far from modern medical care. They were living in the middle of Wisconsin, and had access to any care they might need, but while their child suffered, the parents did the equivalent of nothing. This type of situation has been done to death, but since the parents are about to go on trial, let’s review the responsibilities of the state and the parents (but not the law, which is an unsettled and confusing area even if I were a lawyer). In fact, rather than beat up further on the negligent parents who are mourning the loss of their child, let’s explore a broad range of ethical issues that this case brings up.
A guiding principle of medical ethics is patient autonomy. A competent adult can refuse any intervention. Except in very limited circumstances, children cannot make significant medical decisions for themselves—they are dependent on their parents for their physical well-being. The default position for kids must be to give them medicine that meets basic standards of care. This ethical imperative applies to health care workers and to the parents or guardians of the child. While we may in many ways treat children like chattel, we may not deprive them of normal medical care (or food, clothing, or clean water for that matter). In this same category would be vaccination. Parents who withhold immunization from their children are neglecting their basic health needs (and violating their contract with society as a whole, but that’s a different matter).
The Neumanns violated the basic rights of their child to dignity and life, a horribly unethical decision. This may be mitigated in some cases by profound ignorance. If you truly believe God wants to heal your child’s diabetes, then your actions are perhaps mitigated a bit by your unbalanced mental state. The Neumann’s family warned them of the danger to their child, and any normal person would recognize that their child was critically ill.
In cases where parents refuse to provide for the well-being of their children others must intervene, and “others” usually means the state. If, for instance, parents cannot adequately provide for their child’s nutrition, the state must step in to help them as a matter of basic human dignity. If the state is aware that a child is being denied basic medical care, they must intervene to see if there is any legitimate rationale for this. For example, there was a case a number of years ago where a family declined further cancer therapy for their child who was going to die anyway. The medical team asked the state to intervene, but the courts sided with the family. In other cases, the courts have intervened to coerce parents into getting proper care for their children.
But what if a parent cannot provide for their children? We do make a distinction between voluntary negligence and poverty. If a family wants to get proper medical care for their child, but do not have access to insurance, what does that say about our society? If they could afford the care, we would call it negligence. What do we call it when they can’t afford it? In these cases, we all bear some responsibility.
In parsing out some of these problems, let’s review from a medical ethics perspective (and we’ll look at three of the most agreed-upon ethical principles):
Patient autonomy requires we honor the wishes of a patient as much as we can. If someone cannot advocate for themselves, through unconsciousness or by being a minor for example, we generally assume that they wish to have access to standard medical care, they wish to live, and they wish to have suffering reduced.
Beneficence requires that we act in the best interest of our patients. That means giving them all reasonable options to improve their well-beings. It may even mean applying a certain amount of coercion, bringing it in conflict with autonomy.
Non-maleficence requires us to recognize that all interventions (or non-intervention) can have negative consequences. We must work to minimize harm done to patients, either by our action or our inaction.
If we were to apply these ideals to society at large, we have a little problem.
Would treating someone against the will of their guardian be such a compelling interest as to cause us to violate their autonomy? Intact autonomy seems cold comfort when a child dies a preventable death.
Would providing the care the child needs be in their best interest, even though their parents think it is not? Are we reasonably sure? In this case, if we were to force the parents to allow us to save the child’s life, she could have grown up to make the decision for herself.
Are there sequelae to treating this child that we haven’t thought of that may cause more harm than good? If we were to treat her, for instance, would it break the bond of trust she has with her parents? Would it turn her off further from the medical establishment (whatever that may be)? Once again, she would have been able to find out were she allowed to live.
These questions aren’t easy, but we have a responsibility as a society to protect the most vulnerable of us, and children are certainly vulnerable. It may make the parents angry, but there will be plenty of time for blame after we save the child’s life. It would serve everyone better if they had that opportunity to be mad.