Wednesday, July 25, 2007

Medicine and the Rights of Children

I heard this story on NPR about a year ago. It is he story of Howard Dully's journey to learn about his lobotomy, inflicted on him when he was eleven years old. The story is very heart wrenching, the point where he is talking to his father, literally had me in tears. I strongly recommend listening to the whole thing, starting with the history of Dr. Freeman and his "revolutionary" method for lobotomy.

So how does this relate to human rights? While perusing some blog posts about it, I discovered that one of my favorite sci-bloggers, Orac, at Respectful Insolence, had a post on it. In the comments, Coin, a regular poster at several sci-blogs, said this;

Something that continually bothers me in discussions of both mainstream and "alternative" medicine is the enormous extent to which parents have basically complete leeway in performing anything they personally interpret as "medical care" on their children. This degree of leeway is rarely if ever questioned, and when it is questioned the reaction to said questioning is generally universal horror, with even quite modest limits on a parent's ability in this regard being thought of as some kind of horrible totalitarian abrogation of rights.

The rights of the child, on the other hand, don't seem to really ever come up, even if the medical care in question potentially has serious consequences for (or prevents entirely) the later life of the child the once they are no longer a minor.
This is a very difficult question indeed, not nearly as simple as it seems on it's face. Add to that the question posed in the next comment, by Jon H;

If not the parents, then who?
Indeed. While Dully's is obviously an extreme case, it is an important one. Especially when considered in conjunction with situations where parents choose to utilize non-evidence based medicine, over lifesaving or life-extending treatments for cancer. Cases that have even led to bad law. While I tend to be one who appreciates fairly definitive lines in the law, the rights of children is a very gray area indeed.

This is true far beyond the context of medicine. Parents make many decisions for their children, that will affect the lives of their children for the rest of their lives. The intricacies of the rights of children and the rights of parents to make decisions for them, is a very wide range discussion indeed. For the sake of simplicity, I would limit this post and the discussion I hope it provokes in the comments to parental rights and the limits thereof, to the context of medicine. I have some thoughts rolling around my head, that I may post to the front page later, unless comments overtake my ability to update this post, in which case, I'll just continue this there.

I am genuinely curious what others think about this and hope that you will click on the comments link and leave your thoughts.


JuliaL said...

Here's a really honest response: I want the abilty to make all the decisions for my own children and grandchildren, and I think there are times when the government should be able to interfere in the treatment of other people's children and grandchildren.

You've posed an extremely difficult question. It seems to me that it may not be possible to come to any completely fair and reasonable and effective guidelines as to when the state can overrule parents on the health care of their children. But it would be worse not even to try to develop such guidelines.

DuWayne Brayton said...

Yeah, I think you're pretty aware of my appreciation for legal lines, but I think this is a situation where they are virtually impossible. I am still mulling it around, hopefully I will add to the post soon.

Beth said...

Having some guidelines I fear is just wishful thinking. For one thing, some parents have religious beliefs that dictate how medical treatment is performed (or if at all). Some parents could truly be thinking they are doing the right thing for their child, after all they rely on the professional judgments of doctors. Some parents, as in the case you presented, will find unethical means to get what they want.

And how would a system be implemented? Would we expect doctors to turn in these negligent parents? If they are doing the experimental treatments, they won't be alerting anyone. If parents fear they could get in trouble, they might avoid going to a doctor altogether. Even if you required two doctors to sign off on a child's major medical procedures, this would put a great burden on the parents and the doctors to obtain such an approval.