Thursday, February 16, 2006

Inappropiate II

If you haven't already read the comments from Dream Mom to my February 14 post entitled "Inappropriate," please do so. She is the mother of a special needs child who writes eloquently and poignantly of her difficulty in agreeing to a "DNR" (do not resuscitate) order for her child, even though she knows it might be the best thing for him.

To me, this points out a real problem in our country with these situations, which is, we expect or need the parents to say it's okay not to resuscitate their child. In other words, the parent has to say, in effect, let my child die, which is a huge thing to ask of them.

This becomes even more problematic when it is time to disconnect life support from a child for whom continued treatment is futile and/or for whom continued treatment prolongs suffering. Legally, we need the parents to give permission to do this. Emotionally, it is a huge burden for them. They must say yes, it's okay to stop the ventilator; to themselves, it might seem like they are saying, yes, it's okay to kill my child.

There must be a better way, although I cannot think of one that is foolproof. One alternative would be to have the physician, or a team of physicians, decide when to stop life support. However, although most of the doctors I know would make appropriate decisions, there are some out there who consider it their duty , or preference, to not let babies survive who will have any sort of significant handicap. Perhaps an ethics committee could take part in the decision, but again, there is no guarantee the participants would make reasonable decisions.

So we are stuck with this burden for the parents. Even when it is obvious that it is the right thing to do, it must be one of the most difficult things in life to do. When I am in this situation, I try to make it as easy as possible for the parents to acquiesce, to not force them to make a statement, "Yes, stop the ventilator for my child", but rather to say it for them and have them only nod or murmur assent. I don't know if that helps or not; I hope I never have to find out as a parent myself.

P.S. Please welcome Dream Mom to the blogosphere.


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