Refusing Medical Care for Children: Religious Freedom or Child Abuse?

I read yesterday in Cleveland’s main newspaper about the tragic passing of a 14-year-old girl.  She had cancer.   Why would this tragedy have been reported on Page 1?   As sad as a loss of a child is from a medical condition, this is generally not of interest beyond the family, friends and loved one.  This case was different.  The parents refused the chemotherapy that her doctors advised.  They wanted their daughter treated with herbs and feared that standard medication would worsen their daughter’s already precarious condition.   The parents believed that chemotherapy would violate their religious beliefs.

The parents sought another medical opinion from Cleveland’s other premier tertiary care center, which affirmed the original medical advice.

About 2 weeks ago, the parents received a court order mandating that their daughter receive chemotherapy.  Shortly afterwards, the daughter, who was already on a ventilator,  developed serious medical complications and died.

This case is a tragedy for all involved, as well as for the community at large.  I was so disturbed about reading the details about a desperately ill child with overlying tensions between parents, who I believe loved their child, and the medical and legal professionals. 

  Courts Practicing Medicine Guarantee Pain and Heartache

Yes, I believe that parents have rights over their children’s medical care including the right to refuse treatment, one of our bedrock medical ethical principles.  This is why we secure permission from parents before performing medical tests and treatments on their kids. 

But, I do not believe that this right is absolute, and there is no simple standard formula that we can rely on to guide us..

It depends upon the stakes.   Refusing Nexium for your child’s heartburn is not quite the same as refusing surgery for a burst appendix.   It also depends upon the age and maturity of the child.  A 17-year-old Jehovah’s Witness may be capable of making an informed decision to refuse a blood transfusion.  I doubt that a 3-year-old Witness has this capability.  Should Jehovah Witness parents of a 3-year old be permitted to refuse a blood transfusion that the doctors feel would save his life?   Can a parent refuse recommended vaccinations for their children believing them to be harmful?  If the child becomes infected with a vaccine-preventable condition, what about the health risks to others who might be exposed to them?   Where do the individual’s rights end and the community’s rights begin?

Do children who have not reached an age of maturity and understanding have innate rights that merit protection that may override their parents' rights to direct their children's medical care?    

While it’s best if the family and the medical team agree on a plan, I realize that this is not always possible.  When the stakes are life itself, the issues become raw and agonizing.  The sure sign of a system failure is when the courts become involved.